M.E.: Lives devastated - and sufferers told it's made up
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- čas přidán 18. 02. 2024
- For years many doctors believed M.E. - the long term neurological condition which causes debilitating pain and fatigue - was “all in the mind” of those who were suffering.
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That means many of the 250,000 people in the UK estimated to have the disease have struggled to find appropriate medical care.
There's no known cure, and a new government plan to deliver improved treatment and research which was promised by the end of last year, has yet to materialise.
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Medical gaslighting needs to be criminalised
Very crazy to think that, not to mention unprovable. Great way to ensure nobody gets medical care, anywhere. 👍🏽
@@isocarboxazid patients experiencing medical gaslighting are already not getting treatment today and it would only require a small number of cases to effect a change in attitude in the medical profession.
@@isocarboxazid why tou triggered?
Are you kidding us? We knew with no medical training what they were doing, what they injected was poison. They have no excuses.@@isocarboxazid
It's not so simple. Some patients are seeking drugs, and some have Munchausen, or Munchausen by proxy, as this mom was suspected of... mothers like that can hurt or kill their children, and doctors can't just unquestioningly fuel that, or fuel a drug addict's self-harm. It's not so easy to see what the problem really is sometimes. Doctors are not trying to do harm.
I got sent to a therapist for what turned out to be an infected gallbladder and anemia. We need to start telling physicians that not listening to patients is abusive, and will have consequences.
I had cholecystitis in 2018, and they did listen to me, and saved my life.
especially deadly consequences.
I don't know if it's true but my ME/CFS specialist I used to have told me that my borderline anemia was due to my body having to replace my blood cells faster due to the ME. I was eating tons of meat at the time but still had issues.
@@gregorkrauseSounds like u got lucky.
@@paul9156c yes i sure did.
If you "Don't believe in an illness" that has been documented and proven to exist countless times, you should be fired and have your medical license taken from you, those doctors who failed to act are responsible for the death of this woman, and they should face the just consequences, name and shame these doctors, not to mention, this is why the NHS is becoming despised by people, your child gets sick and suddenly you're an awful parent and must be abusing them, fucking horrific.
There are many people who have no business being doctors - I've also experienced this from psychiatrists and therapists, too. They lack compassion and a bedside manner even if they passed medical school. "You're imagining it/seeking attention" is ableism, period.
@@acmhfmggruit actually need not be a game of telephone as ME is not psychological and any doctor that thinks that should have their license revoked. we fired medical professionals who wouldn’t take the covid jab, we should be able to fire them for denying other evidence based knowledge
There's doctors that don't know Endometriosis exists, or are pretending it doesn't exist for some reason, as my daughter found out. So not surprised there would be doctors that don't believe M.E. exists.
@acmhfmggru I have chronic fatigue. For years, years, I was told I was just depressed. My doctor didn't take it seriously until I developed Fibromyalgia too. When I asked if I might also have Chronic Fatigue she said it was the same thing as Fibro. It is not. At all. Often the doctors are the problem. I had to go to the Mayo Clinic to get properly diagnosed, just because doctors can't be bothered to look up something .
There are no radiologic or actual bodily findings which points to the idea it is psychological in nature. I think its mostly psychological as well. It exists, but it is purely psychological not physical. I meet all the criteria for it but have never sought out diagnosis because I am too exhausted to even go to a doctor. Every day is excruciating to wake up and go to work, but I do it because otherwise I'll be homeless. Every day is horrible struggle for me and I feel like it cannot be like this for everyone but I know it is just a mental problem as there is nothing actually physically wrong. @@1faithchick7
Even if it was a mental illness, people would still deserve care and not be neglected. I feel so much for these people. I have MS and it took almost a decade to be diagnosed because my symptoms were dismissed as "in your head". I know what it's like to cry from pain and fatigue and still have people not believe me. Unlike ME, I know there is a lot of funding for research into MS. It's just wrong to not allocate resources into looking into ME, especially given the recent evidence that infections can trigger abnormal responses in some people.
I had a visit in my home by a doctor to assess me for social security benefits. I was too sick to leave my home to go to be assessed. The doctor said I wasn't ill because I wasn't crying during my assessment...I was too weak to cry.
@@jwsuicides8095 I am so sorry and infuriated at the same time. People all deal and respond to things differently, but apparently doctors think we should be following *their* script. Makes me wonder what are they being taught in medical school.
@@sonialopes7367 Taught to be massive ****** {censored for your reading comfort} ;)
Thank you. x
This happened to my uncles partner she was dying of terminal cancer too, they stopped her money and my uncle found out the guy who came out who forced her out of bed too, was a sports physiotherapist not even knowledgeable of cancer @@jwsuicides8095 it's sickening. I've been fighting for real answers since I was a teen I'm 41 now and I've developed a rare disease that my drs have been ignoring for ten yrs Dercums Disease
It’s not a mental illness….
"Not all disabilities are visible", a phrase repeated over and over in the last decade.
The message still hasn't been received by the general population, politicians or those in the medical field.
GOOD. If that isn't apparent, then what would be visible to you? I dont want to know. And abolish the phrase.
Its such a stupid phrase in general. Which disease is visible? Except maybe Lepra or a gigantic tumor? MS, ALS, Alzheimer, they are all invisible.
People seem to be trying to ‘win’ some sort of social competition; yes, you, you might pretend you’re above but you’re not. To the majority without disabled family/friends people with disabilities (especially invisible ones) look funny and get privileges (e.g. parking) that they don’t. That’s not rebalancing for many, it’s providing facilities that THEY feel entitled to too; just look at how many ‘nice’ cars are in disabled bays without badges (parking is an obvious case that I can evidence easily).
I’d say don’t get me started, but I read the comment… so it’s on me :).
I’m not sure if you’ve heard of the heartbreaking case of Lynn Gilderdale? In 2008 Lynn took her own life. She couldn’t deal with the agony any longer. She suffered for 17 years and finally had enough. This was in 2008 and they’re STILL questioning the validity of M/E! They’ll never learn. Their ignorance will be the death of us all
@@thelonemaiden What?
I will never forget the day my GP told me that "everyone is stressed and tired" and to "do more yoga" 3 days before I was taken to A&E via ambulance. After 2 weeks in hospital, when I finally returned to her care, the GP refused to see me or do any hospital requested followup testing.
Appalling. I had a doctor in ER glower at me and say, "Have you got a psychiatrist?"
they don't like "problem patients." it's beyond frustrating.
I went to my gp under my own steam aged 13 in 1960s with pouring with sweat even just sitting in classroom. He told me to get a better deodorant!!!
Mine told me it was because I had young children. Everyone with young children felt as I did. Took me about 10 years to approach another GP about it. Luckily she's been amazing and very sympathetic to my issues but some attitudes are horrific. It's worse for women, medicine needs to move on from the dark ages.
I have found it is common for doctors who are wrong to refuse to see you or even acknowledge the new info. When I was finally diagnosed with something that explained every anomaly (dysautonomia) the neuropsych i had been seeing for around a decade and told me stress was causing everything refused to even look at the labs and test results. He ended up being transphobic too so I finally dropped him, but he was the only neuro in our small town except for one not taking new patients (was a shortage in our town). Sometimes we are stuck with them and that can really destroy someone who is already seriously ill.
I have pretty severe M.E and I can confirm that we are constantly stereotyped as being ‘lazy’ or that we’re ’exaggerating’. This condition takes over our lives, it becomes our life. I’m 26 and have been suffering for more than a decade now. I have lost friends, I am severely disabled by this condition, and I would not wish this on my worst enemy. Not only do people not understand what we are going through physically, but also what we’re going through mentally, emotionally.
Have you had your blood looked at under a microscope for any kind of parasites? Some doctors believe that even schizophrenics have a parasitic infection that got into the brain.
It's so heartbreaking, I hope your health improves and the future treats you more kindly. Best wishes an love ❤️
@@psisky I haven’t had my blood checked for parasites but have for a lot of other things. And I am part of a study which takes sufferers saliva and uses it to study our DNA etc.
I’ve had endless amount of tests and scans etc. over the years. But I open to new information and research.
@@Chloemegan Some people are also extremely sensitive to electro-pollution i.e. signals going through the body. Everything is worth looking into. Hope you find the solution.
I’m so sorry you’re suffering with this. Chronic pain and fatigue are so lonely. Keep going and hoping and I hope things turn around for you soon. Xx
We need to solve this condition please please. So many lives have been shut down, including mine, at 26 at the peak of my youth after a bout of mono and covid right after. Just turned 30, Ive been mostly bedbound for the last 4 years, cared for by my parents. I was a fit guy living healthy, running almost every day, going mountain biking, partying socializing, living a great life. Now I cant even manage to go for groceries without a crash let alone cook them. The brain inflammation makes me unable to read two pages of a book in one go, let alone work. I was aboht to become an architect before this. Its not just the physical disability, your brain also loses most of its function. Even typing this out is killing me. Ugh. Please we need more funding to solve this, there are so many people suffering in silence.
I hear you totally Cepar as I had an active life too and was doing a degree before I became ill. Your symptoms mirror mine almost identically. Look at the current study DECODE for ME if you can as they are researching to find the cause of it.
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
@@DS-rd9qnhow long did you have M.E?
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin, The Fibro Guy and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
Sugar is a bad one, and I've looked at Dr Motley and others on here for TCM or natural remedies to help. I suffer too but trying to keep going, it's exhausting and invasive and I wish you luck in healing somehow.
ME is a devastating illness and the amount of research and urgency gone into fixing it is pathetic. These people need proper treatments, yesterday. The medical gaslighting needs to end.
I agree but it't not surprising. ME disproportionately affects women. Medical research towards illnesses that disproportionately affect women are chronically underfunded and under-researched.
What absolute rubbish. Why is everything now viewed in the shadow of identity politics, gender, and race? Let's look at the amount of research into breast cancer as opposed to prostate cancer. Does this support your assertion that medical research is sexist? ME is an awful condition which should should be researched and not politicised. I suffered from it myself for two years and think that it is too important to be debased by such trite assertions as this. My thoughts and best wishes are with those suffering from this terrible illness.
In some Countries Lime disease is still not accepted as being an illness, but in other countries it is?
@@matthewoneill4823i think you are wrong about that; doesn't make me an "identity politics" pusher. to paraphrase, just because I'm paranoid, doesn't mean people aren't out to get me. given that prostate cancer mainly strikes much older men, and is more treatable (my dad has it), could be why it gets less attention, if it does, which i don't know to be true.
it seems like the existence of all the people with long covid will have to increase the research on this disease, but at the same time, it's quite possible that long covid patients will also not be believed.
I got ME At age 37, it hit me like a freight train. I thought I was dying I was so sick. The worst part was doctors all told me something different. Some yelled at me and told me it was all in my head. The closest any Dr got back then was one who diagnosed me with Dysautonomia. I suffered for years before I found a DR who would treat my pain. That made all the difference. It allowed me to get up and move around, whereas before I was bed bound. I still couldn't do much tho.
That was all bad enough. And then one day, I was in a wheelchair in line at a store, when I heard my 15 year old daughter, say from behind me, 'Hurry Mom, I can't stand.'
I quickly excused the brief scare I felt as I remembered my first symptoms were it was hard to stand very long without getting Noodle legs and weak. My daughter was a joyful, happy, very gifted, child. Teachers told me she was a prodigy, she didn't write a paragraph, she wrote a 5 page story in kindergarten. She taught herself piano, guitar, and I walked by one day to see her drawing a perfect human eye. She had no art training. I was surprised. She started drawing faces that were like photographs, and she went on to draw all kinds of things incredibly well.
But slowly over the next few months, she started being exhausted by getting ready for school. She called me one day and told me she had blacked out and found herself in the tub with the shower curtain covering her as she stood at the sink getting ready for school. She started putting the seat back all the way in the car, lying flat as we drove to school. This was a child who loved school. She would effortlessly do her work. It was fun for her. But day after day, she got weaker and weaker as I encouraged her to go in and try to make it through part of the day at school. One day, as we sat in the parking lot as she lay there with her eyes closed flat on her back, apologizing to me for taking so long to get the energy to go in, I finally accepted that she was just like me.
I had been taking her to doctors, a cardiologist found Dysautonomia in her, and finally she was diagnosed with ME. Her doctor gave her very limited pain medicine and we began the journey of watching her lose the ability to do everything she had been so gifted at doing. She is bed bound most of the time. But she remains her sweet, cheerful self. She just exhausts so easily. She's Soo young, she got turned down for disability, and she's scared what her future holds for her. But she keeps trying. It breaks my heart because I know exactly what she's going through.
i wish you two the best of the best, your daughter must be a wonderful person
i am so sorry. sending love to the both of you ❤❤
m.e. patients know what you guys are going through; try to stay strong; i think a cure is possible, maybe not too far in the future.
You can heal this, your daughter can heal. A lot is in childhood trauma and stress and a weird mechanism of the brain. Go look up releaseCFS and join the community.
I wish the best for you. My best friend has ME and found one of the few meds that helped was naltrexalone. She has been fighting for over a year to have her med be consistently approved by pharmacies and even be covered by insurance, multiple fights and phone calls a month trying to prove its a real illness. If advocacy does one thing I really hope just acknowledgement for illnesses like ME are taken at face value and believed.
In 2018, I collapsed at work from exhaustion. I already suspected I had ME and had asked for adjustments at work, but they were denied that day because they were "too busy". A colleague called the ambulance as I could not feel my legs, and all the way to the hospital the ambulance staff just laughed at me and said I was depressed. At the hospital, I was repeatedly laughed at again by nurses who could not take my blood and left me in a stretcher for eight hours. When I regained some strength, I walked out and only then did they remember I had been there all day, but all they wanted to do was call the police on me for walking out. Later, I spoke to a GP and said "I think I have ME" and she held my hand and said "you're just depressed". Just last year, I mentioned to my neighbour I had ME - he never spoke to me again. When I told my family, they told to drink more coffee. The problem isn't ME, it's people. It's always people.
I'm sorry for everything you've been through but if you haven't received an M.E diagnosis, believe me you do not want to get one!!! There are so many other illnesses similar to M.E that have treatment options and help, M.E is certainly not one of them though.
Keep fighting and advocating for yourself but seriously you want to hope you don't have M.E as you will just experience more of what you've already described, it is a death sentence, utterly miserable.
Its PEOPLE. Thier ignorance and prejudice accounts for the majority of the trauma and injustice one has to endure. They always feign being on your side though and talk psycology like they have any idea. Nobdy really knows the truth until its them stuck in bed unable to move. And they wont ever get like that if they havent yet.
Everyone is being controlled by something and many people are aware of it now and think that everyone is aware of it that is part of the reason they don't take you seriously. It's absolutely sucks sometimes. I was hospitalized before I was aware of it but had the opposite experience they locked me up and I got all the needles :(
Yeah, I get that. :( I've got Ehlers-Danlos syndrome, and it's so common for people to say that it can't exist because they've never heard of it, and I'm making it up for attention. The federal government agrees I have it, and that it's fully disabling, but randos prefer to call me lazy.
😢🙏💛🙏
I’ve been bedridden over 8 years because of severe ME & tube fed since 2016. I was online friends with Merryn and miss her terribly. She was one of the kindest souls. We would seek comfort in each other via text when we were able because we were going through the same thing. I feel a sense of guilt for surviving my gravely ill years when she unfortunately didn’t. Not a day has passed since her death that I don’t think about her during my own suffering. I know that she’d be so proud of her mum for doing this interview and spreading awareness. It would mean a lot to her as it means a lot to me and my family that this is finally in the mainstream media and representing the ME community accurately. I hope to see more reports like this in the future and for people, especially doctors, to start taking us seriously. We deserve better.
I’m sorry for your loss.
I'm glad you are managing to survive, I spend most of my time in bed. I'm up for 2hrs per day doing very basic things (except i spend all day/night in bed every few days to recover from that) and rely on support services for nearly all of my needs. I'm sure I now also have PTSD due to how bad I was treated and all the disbelief and bullying I had in the past with this illness.
I can relate to your message a lot. I've suffered from M.E for 15 years now, completly bed bound in hospitals, neuro rehabs, and care homes ever since. Im also PEG tube fed, and stuck in a dark room 24/7. it's extremely lonely. so im glad Merryn and you had each other to talk / relate to. I'm sure she found great comfort in your conversations. I'm so sorry for your loss. It must be so hard since she's gone, so i hope your coping okay 😞
It's so awful how people are treated when the world doesn't understand you, it's amazing that you're still here and people need to hear your stories and taken seriously. I hope that this gets easier and that people listen.
I can relate. I have lupus and have been in online lupus support groups since 2002. I have outlived almost all of my lupie friends. Survivors guilt can be rough. I have even lived longer than many of the other sick women in my family. I often wonder why I have been spared so long.
I have M.E - every time I’ve been to hospital, I’ve come out worse. To the point now, that if I have a new problem (something that normal people wouldn’t hesitate going to hospital for), I don’t even go to hospital, because I know that they will not show me the care I need because they don’t understand M.E at all. I’ve been made to sit up when I’ve been bedridden by paramedics who needed to “see” - see what?? That you’re forcing me to do something that will make me worse? It’s a constant fight for everyone who lives with M.E.
Sending love to everyone with M.E ♥️
Me too. It's terrifying knowing that going to hospital will make you sicker, not better, the implications are far reaching. Sending you hope and spoons from one severe ME patient to another
Sending you much love back. ❤️💚💙
What is ME. No one can tell me. Thanks
@@hollybrabeau me /CFS = myalgic encephalomyelitis / chronic fatigue syndrome = it's an illness that is characterised by extreme fatigue that prevents people from carrying out normal every day activities, the fatigue is not just feeling tired it's a lack of energy at a cellular level that it isn't possible to push past without getting even sicker. Patients also have a whole range of other symptoms starting with post Exertional Malaise (a huge increase in symptoms caused by going even slightly over their physical or mental energy limits), brain fog, joint and muscle pain, digestive problems, feeling like they have really bad flu, and lots of other smaller things.
It affects every organ system in the body, all your bodies hormones can be a bit disrupted and so you get all these domino effects that can happen in the body leading to different kinds of symptoms that can change from one patient to the next depending on what is affected at what point of the illness. Some people recover within the first couple of years, after that generally people don't recover, and stay sick for decades.
It can range from mild where people can still work part time and walk around and live a smaller version of normal life, all the way through to very severe, where patients are completely bedbound, unable to move around much in bed, with extreme sensitivity to sound and light and any form of sensory stimulation including speech, and are unable to look after themselves, that level of illness can also leave them unable to eat or drink for a variety of reasons (from extreme muscle exhaustion to intense pain on eating, or extreme slowed digestion), these people are VERY poorly and their symptoms can be worsened by many many every day normal things such as having a carer wash them in bed, or an unexpected noise from outside. It's pretty brutal.
We don't know the root cause but there are lots of findings showing problems and dysfunctions with the way the immune system works, an exhausted or perhaps constantly active immune system (like it's trying to fight something off permanently) and many other things that cause those wide spread symptoms. It doesn't usually kill people, though there are some who die, mostly it's the complications that end up killing patients if they they get to the very severe end and deteriorate so far that they can no longer eat or drink for example, the NHS isn't good at dealing with them in this state. They don't understand what the condition is and think it's just this mild fatigue condition. They are often unwilling to engage with the latest research on the illness, or listen to the medical professionals from outside their own hospital or GP surgery who DO understand very severe ME. Which is kind of insane given its 2024. Feels like being back in the 60's or something.
Hope this info helps a bit.
@@hollybrabeauthe mitochondria fail to make energy.
I get told so many times my illness is;
'made up',
'you look well',
'stop being lazy'
'its just in your head',
'you need to get out more',
'you're not ready to get better',
'you're nothing more than a benefit scrounger',
Shockingly most of those comments are from professionals....
Invisible illness's are the worst, on top of that miss understood invisible illness's are even worse, ive never felt so alone in this world as i do today, im an outsider, i dont belong,
My daily life is such a struggle from the moment i wake to the time i sleep, the struggle to keep myself alive daily is a huge battle, then, on top of that i have the mental struggle of being ridiculed daily for something i never asked for, i dont want it, i never did....
Its so sad to see people dying from this illness, yet we still dont get any more support or recognition from those who should be helping us, instead we get abused by the system,
In 2001 when i lost my life to ME, i got told 250,000 people in the UK have ME, today that figure stands at 250,000 people, 23 years later nothing has changed, nothing to help us get a better understanding of our condition, how many more people will need to die from ME before the government wake up and realize how serious this is,
Im still human.
RIP Meryn, your suffering wont ever be forgotten
I BELIEVE YOU!!!!
I believe you too.
Heartbreaking to read your comment. Sending you best wishes for a future that is kinder to you ❤
My heart goes out to her. You don't just go from bouncy happy to bedridden because 'it's all in your head.' Not the same, but I went with undetected malaria that did not present with textbook fever. For a month, my body's immune system spiralled. I was crying every day. But because the doctors couldn't detect the virus in the tests, I was told I should 'seek counselling.' Even though I kept telling them everything in my life was good, they tried to convince me that I was suffering from burnout. It destroyed me. I was sobbing on the phone to a friend saying 'am I losing my mind?' Eventually, I ended up in a clinic on fluids. Fourth blood test and they finally found it. I started sobbing with relief because now I could receive the right medicine. I had tonsilitis and a kidney infection by this point, and on top of that I had to beg doctors to take me seriously. It was exhausting. And that was only one month. I can't believe she had to go through that for three years. It's inconceivable. You don't have to be a doctor to see someone's sick and that - even if you can't detect the exact cause - they need real help. How awful that the people who should have been supporting this family added so much stress to their lives. And because they’re ‘professionals’ you start to believe them, even when they’re talking absolute nonsense.
Awful you had to go through that. I hope you are better now.
Yes, thank you. I made a full recovery almost immediately after receiving the correct medication. There's a really interesting rapper called Ren who went through something similar with lyme disease. A lot of his music is about that struggle before he was diagnosed, when people were telling him it was depression or psychosis. He's raised a lot of awareness about this issue.
@@writerinrwandaI really respect Ren, he’s a massive advocate for ME because of his own experience. Unfortunately it seems like the only people who can sympathise with ME patients are those who have had similar experiences. Anyone else can’t understand it, so they choose not to believe it.
He's right about the culture in the NHS. I have close family who are nurses and they have said to my face that they believe sufferers of long covid and ME are just lazy. The sad part is I had ME for the entirety of my teenage years, they proclaim to believe that I was ill but won't extend that to anyone else apparently. It's both mind boggling and devastating.
If you're "lazy" then that would only happen if you get a good life from it. I was left to lie in my own bedsheets stained with urine and sweat and menstrual blood, etc, for 8 months because I was "lazy". They have no idea.
I've heard it too and worse
I have fibromyalgia and suffer from pain and chronic fatigue. I was a skydiver, it was my life , but I had to retire. To say your lazy is ludicrous. I would love nothing more to be out there jumping again . I hate when people tell you , if you get up and get outdoors ,you will feel so much better . What do they know ?
That’s extraordinary! ME has officially been a disease since 1969 and there are over 7000 peer reviewed medical journal articles supporting a physiological basis for ME according to Dr. Tony Komoroff at Harvard. It’s ridiculous that medical people just substitute their own “beliefs” for scientific reality.
That's insane as Studies have shown that the majority of people with ME were overachievers.
Post viral diseases are real. As an eight year old in the sixties, I had some sort of post viral disease after having mumps, that lasted a month or more. This sort of disease must be treated seriously. I can still remember how tired and weak I was. No one should have to suffer like that, or be told they are imagining it.
57 years with ME [not CFS] and counting.
@steveboyle184 24+ years here (but my Dad & i believe it's been pretty much been lifelong, I'm 42 now) and yes M.E. is certainly not the updated name of cfs. I only say I have M.E. it is far more appropriate a name. Sending gentle hugz 🕊
@@abigailporter2933In the U.S. especially, "M.E." is typically used interchangeably with "chronic fatigue syndrome." I do agree that M.E. is a more appropriate name because 1) It's a disease, not a syndrome, and 2) People tend to hear "chronic fatigue syndrome" and think it's something minor or silly.
But since they are both terms typically used to refer to this singular complex and poorly understood illness, if some people use M.E. and others use C.F.S., or if they do what many people have begun to do and say M.E./C.F.S., then I think they're all valid.
:)
I agree wholeheartedly! I have had ME/CFS symptoms since I was ten (in the 1970s), after having scarlet fever. It’s such a devastating thing.
@@Bl00Buttonsit is a syndrome because it's a condition without a specific cause characterized by a set of symptoms. Any chronic debilitating illness will affect a person's mental health, so it will inevitably be associated with a negative mental state.
99% of the funding that’s gone into researching M.E. Over the last 40 years has been spent on psychological interventions that have repeatedly shown to hurt at least as many as they help, if they help anyone . I’ve had M.E. for 27 years now. And it’s been enormously depressing hearing about the occasional biomedical study that finds physical illness, only for all the money for the next ten years be poured into graded exercise therapy or CBT and hear the “foremost experts in the country” talk about psychosocial disorders and exercise aversion. I also have mental health issues, I know the difference. When my M.E. is doing ok but I’m depressed if I go for a walk i feel better. When my M.E. is bad and I go for a walk I spend the next 5 hours in bed and can barely form a coherent sentence for the rest of the day. And depending how long the walk was I might end up feeling like a zombie the whole of the next day too. And this is me feeling pretty good. For 5 months last year I only got out of bed for meals and the toilet and had to spend a half my waking hours with my eyes closed and an eye mask on because processing visual images was too exhausting. I hope that with all the people now suffering from long covid and the attention it’s getting that doctors and medical researchers might actually start taking this illness seriously. I really don’t want things to slip back and for all those millions of long haulers to get abandoned and gaslight like M.E.ers have for soo long
I'm in the same situation; the scorn, judgement, and disbelief of family, doctors, co workers, etc. is very depressing, but I think that those of us who have the disease know the truth.
The only ones who truly understand are the ones who have experienced it. 26 years here.
In a desperate bid to get better I did graded exercise and CBT and it made me housebound. I was working 15 hours a week prior to that. Never felt so betrayed in my life.
@@RikSolstice I'm so so sorry that you were failed so miserably. You deserved and deserve so much better. We all deserve more care, support, and respect from medical professionals. The world at large could learn so much from our experiences by just listening and really taking us seriously.
Wishing you some more gentler days ahead, however that looks for you!
Love, a fellow housebound M.E sufferer
My mom lost the fight after 20 years battling it. She ended her own life around 13 ago. I still miss my mom. She wasn’t the best woman and made choices when she was ill to betray my father. Nonetheless. I wish more was done to help her in the medical profession. My sister is about to have her first baby and she is now 7 years into this illness as well. sigh…
The gaslighting is the worst.
I was very sick & felt myself dying- falling, fainting, horrific pain, migraines, vomiting, major swelling everywhere, etc & doctors told me I was just depressed/bipolar- I had no insurance because America sucks & I couldn’t work- my memory was gone, I cried all the time & didn’t know why… I finally borrowed $$ to get MRI’s of my spine & brain - 32 brain lesions, 3 herniated discs, nerve damage but they all told me I was just mentally ill before that. Not even my family believed me thanks to doctors. Luckily my partner did & he took care of me until we finally got an answer… I’m lucky to be alive. I changed my diet to vegan gluten free no processed foods at all, low histamine, it took a while but I figured out which foods made me sicker I can’t have oatmeal, etc I stick to water for drinking. But doctors were perfectly happy to let me suffer with intractable pain & die at 50 years old. They should be ashamed how they treat people 😪💔
Do you have EDS and MCAS? Sending hugs, so sorry for everything that has happened
@@curiouslittlefrog yes & MS xx
@@LadyandtheScamp4Ever 🐸🩷🩷🩷🩷🩷
ME cost me two jobs, one relationship and most of my hope. But nothing compared to your loss... I'm so sorry for you all.
Same. I’m slowly recovering g now. Hope you are too.
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin, The Fibro Guy and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
Please please seek help through brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
Same. Im in year 4 of recovering. Finally I no longer grieve my losses, and I can finally feel a little bit normal again. I am very lucky to be alive and not dead on the street. Hang in there its gets better as the trauma part fades...
I have cronic fatigue (not as bad as this poor girl) caused by MS. It destroys your life. I shower, sleep for 2 hours. Get up do the bins and have tea, sleep for 2 hours. Make dinner watch an hours tele, sleep for 8 hours. Start all over again the next day
Me too. I can do maybe 50% of my former pace. It sucks!
This is how I live too.
I’m surviving like this as well 😢
I’m so sorry to hear that. The fatigue really is awful and it is life destroying. But I need to point out, not to correct you in any way but just in case it’s not clear to other readers, that ME is not just chronic fatigue. Chronic fatigue is just one of the many many symptoms of ME. Every single bodily system is affected and becomes dysfunctional.
Solidarity to you from someone else in the chronic illness community. I hope research and effective treatments are found for all of us.
I get this from Psoriatic Arthritis and a few years ago, developed Sleep Apnoea as well, this is not responded brilliantly to treatment. People really don't understand. They think I'm lazy. Being treated well by people is now such a rarity that it can bring me to tears. And that definitely includes doctors.
My dad was diagnosed with this year's before covid (it was called chronic fatigue back then). He lost friends, jobs, and was treated like garbage. Dr's even told him that he was making it up. It's been almost 20 years and he still suffers relapses. It's so frustrating seeing this still isn't being believed.
I was diagnosed with Fibromyalgia in 1993, with the M.E also. I cried with relief at thee diagnosis. Finally someone believed. E. It took a specialist at the hospital to diagnose me. I had been in pain and exhausted since I was 18 19 years of age. I was28 when diagnosed
My docto still says after 2 strokes, the severe depression with it, that I should just. Work is the best remedy. Moving. Hahaha. What does he know
I’m 58 now, have worked very heavy labour irregardless, I had no choice. I’m inallly written off. 2017 they finally wrote me off
Gaslighting at its best still
Chronic Fatigue used to be considered just "Women's drama". Now that men are getting this diagnosis, the medical community is beginning to take it seriously.
I've had ME for nearly 33 years, I was 27 when I became ill. I lost my career, chance to have relationships and children, as well as missing out on all the little everyday things people take for granted. So many people have lost years and decades to this illness, I never thought I would still be waiting for acknowledge of the seriously debilitating nature of this illness 3 decades later. There have been several false starts with official reports where we hoped for change but it never materialised, let's hope this time, at last, it does.
i hear you; this disease is really a life destroyer, and yet it is completely trivialized and dismissed. i don't think anyone really knows what it is like except the sufferers.
It's so sad reading what you said because it sounds like me. I'm 10 years behind you and I'm coming to terms with the fact that my career and chance of a family are over. It's so incredibly cruel. Fortunately I have a very devoted man friend who gives me the emotional support. I have my mum to look after me and I have enough energy to do craft projects now and then, but they wipe me out and every time I get covid, a little more energy is stripped away. I really hate this thing!
@@caves7361I truly believe it is cost figures that are currently spurring some action off the back of long covid. The pandemic has given a glimpse of the despair to people who otherwise had no idea. The long covid people stepping away from work due to sickness is what is finally making M.E and post viral illness in general finally be acknowledged a little after decades of suffering.
have you tried oxygen water? or wim hof breathing
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin, The Fibro Guy and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
Those doctors should be investigated and a public inquiry launched.
It's literally all doctors, the only difference is how arrogant they are.
Leaving a comment for the algorithm
Those doctors don't need to be investigated, they need to be sued and pursued for lying to the mother.
Sadly Government health service is corrupt, from my experience the health service will have already altered/deleted digital medical notes and created facts to fit their theories in order to cover any wrong doing. It is remarkable the length these authorities will go through in order to cover up wrong doing and is the main reason the NHS never learns from mistakes, in order to learn from mistakes the NHS needs to accept that they were wrong.
@@MrNuke101 they need both. but they also need to lose their licenses if they are repeat offenders.
This is an issue that NEEDS to be highlighted and exposed within the NHS. Health professionals PERSISTENTLY not taking patients seriously and constantly blaming actual illness on mental illness or “anxiety”. For years I tried to get help for a pain I had within my chest/armpit area to be told that it was all in my head and I was anxious. I now have a solid lump under my armpit which a doctor STILL tried to say wasn’t there until it clearly showed up on a scan. It’s disgusting and scary. I don’t trust anyone in this institution anymore!
Mental illnesses are actual, potentially debilitating illnesses. Please don't drag down sufferers of mental illnesses, just because your particular illness is not a mental one.
Not just nhs. The entire system
I was very honoured when I was asked to be part of this film, I’m very lucky to live near the Golbourne clinic and Dr Gaber and his team, I have been part of this service for 18 months and benefited a lot from them. I’m hoping that there will be more funding and that the government shall invest then we can live normal lives the same as other people who don’t suffer with M.E. Stay strong fellow suffers ❤❤
What do they offer in the way of treatments? I've taken part in experiments and treatments, etc, since the 80s and not found anything that helps...
@@jwsuicides8095there's also Bath RUH Fatigue Clinic, you can see them online
@@jwsuicides8095
I was going to ask the same thing. What is the miracle drug/cure that helps you live a normal life?
Lord bless and keep you ❤🙏
I’m in tears watching this.
I had glandular fever at 14 and fell ill with awful fatigue and muscle pain immediately afterwards. I have been ill with ME/CFS for the past 54 years. At first the doctors would tell me it was all in my head and sent me for psychoanalysis. Five years later my GP finally agreed that something else might be going on. The only treatment still, all these years later, is pacing. I’m currently suffering a flare up and the fatigue is crippling and life destroying. The particularly cruel aspect of this illness is that the desire to be out and living life remains just as strong. I watch other people live. I wonder how far forward research for other chronic illnesses have moved since 1969?? Further than ME/CFS I suspect.
i feel the pain; wish there was something that could be done. I'm not giving up hope yet though; the two things that give me the most hope are long covid patients and AI. putting together all those new patients with the incredible analysis tool of AI, and it is possible that a treatment could be near.
As a sufferer myself it's not in your head and the professionals out of embarrassment say it's in your head because they don't know how to treat it. Look at the current study being done called DECODE for ME, they need as many people as possible to participate if they can.
Please,.what.is pacing ? I was never offered a treatment idea . I last.saw.a.doctor over 15 years ago .
@@satsumamoon pacing is you basically reduce what physical, mental and emotional exertion you do, right down until you're at a level where it doesn't give you flare-ups/Post Exertional Malaise/exhaustion within 48 hours afterwards. Then you try to keep your exertion within that 'baseline' level long-term. For a good few months afterwards. Only after you've been steady like this for ages, can you safely risk doing a bit more on a good day, without setting yourself back. It also includes planning ahead and having a lengthy rest beforehand if you know you have any exertion coming up.
It stabilises you, which CAN sometimes allow your body to gradually recover, and usually prevents you getting worse and worse and worse.
It's setback every time you get an infection unfortunately.
Exact same origin story as you!!
Sean O’Neill spoke very well, amazingly eloquently. But, the answer to “what would it take for attitudes to change” is - it’s unacceptable for them to not change immediately. ME patients face life threatening discrimination during immense yearslong or lifelong suffering. There is zero excuse - the disease is documented by Nice. We all deserve an apology for being treated like modern day lepers by our governments.
It would take the doctors and persons in power to get it severely for any real change to happen quickly. Unfortunate.
I agree with you, but realistically we know changing people's mentality always takes longer than ideal - I think that's why he said that. Even when people realise something they believe is wrong, it takes time to seep into them until they are really convinced, and not merely parroting what they heard from others. A superficial level of understanding is better than complete disbelief, but it can be dangerous as it will easily revert back to disbelief. Changing your mind or that of others is not like flipping a switch.
I have a diagnosis - now - of severe lifelong ME !!! 72 years of pain and silent struggle. It is very weird to think I struggled as a school girl and got rebuttals from mother and NHS.
Wow, I had no idea. God bless you all.
It really depresses me that there are STILL people out there who don't get this thing. I've been seeing the same news reports for the past 10/15 years and nothing seems to be getting through. I wonder if we will be seeing the same stories being told in 10 or 20 years. Ridiculous!
I've been seeing the same reports since 80s. This has to stop!
Our human bodies and minds are very hard to understand. Very complex systems.
The Golden Girls had an episode about ME and how Dorothy was treated by doctors in the 80s. It is actually very accurate, I recommend watching it. Season 5, episodes 1-2, "Sick and Tired"
@@SuperMrsMar It was indeed a seminal part of opening people's eyes but it wasn't realistic with how people with ME actually live and the long term realities, imo.
@@SuperMrsMar wow! I'm really impressed by that. In the UK, it's only in the last 10ish years that we've stopped being the but of ironically lazy jokes!
*IN 2019 I WAS 3/4 THROUGH WRITING A BOOK* on how to get in the best shape of your life in your 40's - I was in the best shape I had ever been - VO2MAX of 58
In 2021 I was walking with a stick. ME and Long Covid are *ASTONISHINGLY REAL*
MCAS is linked to Long Covid.
Search the videos below for more info of MCAS.
• MCAS: what is Mast Cell Activation Syndrome? - Online interview
• The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin
• Here's How You Treat Long Covid | Lessons From MCAS - Dr Tina Peers
• Mast Cell Activation Syndrome: More than “just allergies”
• From BBC NEWS, Long Covid triggered our MCAS, but doctors didn't believe us
• Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant
• NIH: Genetic explanation uncovered with links to ME/CFS symptoms
From Natinonal Library of Medicine.
• Mast cell activation symptoms are prevalent in Long-COVID
• Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome
• Immunological dysfunction and mast cell activation syndrome in chronic COVID
• Mast cell activation syndrome and the link with chronic COVID
• Mast cell activation is associated with post-acute COVID-19 syndrome
• Successful Treatment of a Patient With Severe COVID-19 Using an Integrated Approach Addressing Mast Cells and Their Mediators
Please believe us; help us. We don't want this illness.
I believe. Been chronically ill for years.
Please, seek help through brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
I have people say "good for you" when I tell them how long its been since I could work. I makes me want to cry they have no idea how hard it was to get as far as I did in my career before I lost it.
@@evonne315 I thought people would be at least a little more understanding after lockdown; being stuck in their homes for so long unable to go to work or go out for leisure activity and fun... It should've given them *some* idea how awful it is being forced to stay at home 24/7. I guess they forgot all about it as soon as the world opened back up. I'm sorry x
@@maegansmith2687 allow me to ask, how severe is your M.E?
I agree, and I wish that more people understood that just because they don't understand or see a drastic visual disability DOES NOT mean that there isn't immense pain or suffering and they should still try to be empathetic toward the person who is affected (or at the very least not be a turd).
I just turned 60. I've spent half my life with M.E./CFS. It's a demon that has never let me live nor die.
i hear you; I've had it for 10+ years, and I really have to think hard to try to remember the person i used to be. gotta find some new person to be, i guess, but the challenges are great.
Sending love, and hope and strength xx
Perfectly explains the state of purgatory this disease inflicts on us.
How awful 😢
@@zw9802 I don't even have a concept of feeling normal anymore. It's this continuous state of pain, exhaustion, cognitive problems, boredom and the list goes on. My friends' kids are now of the age I was when I became sick. I'd love a family of my own one day but I doubt it's on the cards.
I am so angry at the wilful ignorance of some of the medical field, politicians and people who deny this and other conditions like fibromyalgia. They need to educate themselves about these conditions. I mean seriously, a previously healthy 15 year old wants to get so ill and die? My heart goes out to all of her family and friends.
Thank you so much for this video.
People with ME die prematurely
- from organ failure and cardiac arrest
- from early onset cancer
- from infections which are otherwise not dangerous
- from co-morbidities which often come with ME, like MCAS
- from suicide because there is no treatment and no perspective
M.E. is never written down as the cause of death.
Correct. What’s sad is I’m one of the lucky ones & they found an immune deficiency on top of this. Thankfully that gets me immune replacement therapy which has restored my life to at least not bed bound as a result.
I am an Incline Village survivor, original prototype for Holmes 1988 Chronic Fatigue Syndrome. We had a high degree of belief at Lake Tahoe due to the fact that doctors and the public actually saw the disease. It was doctors outside this area who generated the myth that it wasn't believed, and fought to prevent anyone from coming back to "Ground Zero for CFS" to find out how much we actually knew about this mystery disease. The sheer malevolence of the medical profession toward the "CFS" construct makes this the worst and most outrageous act of medical malice in the history of the profession. In fact, the name itself was specially selected out of a list of good ones for the precise purpose of enabling and encouraging doctors to trivialize and despise this disease.
Hillary Johnson’s short book THE WHY is definitely eye opening on this topic.
Absolutely right, it's malevolence on the part of Doctors and spiteful Governments. I developed ME around 1993/4. (There's some overlap with a thyroid condition and a spinal injury that my doctors failed to diagnose for nearly 30 years). I was fobbed off with all sorts of diagnoses like depression. On top of being this ill, sick people have been wilfully stigmatised, ignored and denied adequate healthcare. In the UK, that's motivated by Dickensian attitudes to welfare, and the associated panic about any illness that can't be tested for and might be supposedly easy to fake. Btw, my cousin was newly qualified Doctor himself when he developed ME. I'm sure you won't be surprised to hear that the way he was treated by his so-called colleagues was beneath contempt.
@@CC-hx5fz Doctors treat their own colleagues who get sick even worse than they treat patients.
As if the doctor turned traitor to the profession by joining the enemy.
also adding that i think it was right around the late 80s when i first heard of CFS, so maybe it was due to this event you mentioned, and i remember getting the impression that the disease was misunderstood at best, and probably some phony insurance scam or ploy to get attention. wow, how far we have not come, but maybe change is near.
Wow. My hat’s off to you as an Incline Village survivor. What the CDC did there is absolutely criminal. I’m 4yrs disabled with MECFS/Long Covid. I’ll be advocating for ME rights for the rest of my life, regardless if I get better or not.
Thank you for covering this. I have ME myself now at 35. Got it 3 years ago. I was a perfectly normal 32 yr old at the time w a great career & life & now I am nearly bedridden & it keeps getting worse. We have 0 treatments, Drs don’t help & can’t even get diagnosed. When one looks at the whole history of this disease, including the Government’s, medical establishment etc it looks like the wildest conspiracy theory ever, yet it’s all too real & true. WE NEED GOVERNMENT FUNDING FOR RESEARCH INTO THIS HORRIBLE DISEASE! We need treatments to get our lives back! We need more healthy people to help. We are too exhausted to even help ourselves! Often I am too sick we even lay here & type. My sympathy goes out to these families
You’re definitely not alone and I agree entirely. 🙌
It’s not over.
3 years ago the start if Covid and Jabs ?
@@paulatreides0777 COVID induced didn’t have any “jabs”
There is hope. I had ME and was also bed ridden. I now live a normal life. I found that anxiety was keeping my body from recovering. It was keeping me in a state of stress. I had glandular fever and then fatigue followed. I did not realise my constant state of anxiety about my fatigue was stopping me from healing. Sometimes people make this things binary. There many outdated attitudes that say it is all in your head, but it is also true that our mind can impact the body in powerful ways. My fatigue was totally real and crippling, but my mind was playing a role in stopping me from healing.
@@paulatreides0777 interesting that you suggest covid. My fatigue started before covid due to repeated infections and repeated surgeries and has progressively got worse. Now because covid has happened nobody seems to care or listen. Services that previously would see patients to investigate ME/CFS are now full of long covid patients who might have similar presentations but are also actually by and large quite different and symptoms across different organs vary quite significantly. I.e. heart, lung and circulatory conditions which are directly attributed to the initial covid infection. There is a huge study going on at the moment called DecodeME which is great to be part of but not enough is being done.
The outpouring of grief, frustration, pain and fear in this comments section is palpable. Please do something to help us.
Please seek help through brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
Ive had ME for 25 years, bedridden for the past decade. I cant shower and pain levels are at a daily 8. Medical assistance in dying costs $15,000 so i cant afford it. We need to be taken seriously.
I'm so sorry. I'm in a nearly identical boat, but assisted dying is illegal here, so even if I could afford it, anyone who helped would be prosecuted. This disease sucks.
Severe ME at 21, in bed barely able to tolerate watching this. Thank you for covering this.
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
i came across the work of Anthony William Medical Medium 7 years ago and it's been a game changer for me. i would also like to say its absolutely possible to recover, just takes time and consistency
That lady who filmed her own ME journey and made it into a documentary got a spinal/neck surgery fusion after the documentary and it solved her symptoms idk if that info helps
I've had ME for years and have noticed that if I start having sugar, puddings etc my breathlessness gets worse. Don't know if that may help you but I hope you find some help, it's a horrible disease that you're almost embarrassed to tell anyone as they think you're lazy or making it up. Good luck❤
I thought I was dying and didn't know what was wrong with me for a year. My doctor advised exercise I thought her mad as I could barely walk. I did try on up days to exercise then I rested. Gradually I did improve a lot. But still have to be careful. (20 years later and managing to enjoy life) I really hope you improve soon. Vitamins, kefir and don't eat too much my advise. Avoid fruit juice (liver problems) and the smallest weights when you can, dancing also on a good day but if not try to sing. With love, X
Thank you Channel 4 and thank you from the bottom of my heart, Sean O’Neil and Clare Norton, for continuing to advocate for all of us with ME alongside everything you’ve lost and been through, my heart is with you, Maeve and Merryn 💙💙💙💙
Well said 💙💙💙
Leaving a comment for the algorithm
So sad. I have suffered from CFS/ME for decades. I had a severe case of glandular fever at 18. Years of being bedbound. When I got married, my dad said she is now your responsibility to look after her. I spent years in bed, developed severe thyroid problems , operations, had children and without the help of my parents we wouldn’t have coped. Years of I’ll health, mysterious illnesses, and almost NO help from the medical profession. Because all the tests came back normal, they didn’t know what else to test for. They don’t seem to have any tests for mystery illnesses which are so real. Months in hospital many times since I was a child. I was desperate to make my way in the world and do things, instead just sit, and sit and sit. At least I’ve left mattress island behind at the moment. Without my husband I’d have been dead long ago. He has to make all my food.
I’ve heard of 2 young people dying in Canada and US recently. Another from NZ who committed suicide because of it. I’ve spent years thinking about death. Just so sick, in pain, so lonely, and forgotten. People don’t want to know you if you can’t participate in their life. They have no understanding.
Three people I've known who had ME have died as a result of this illness, two I knew from places were we used to chat and one who lived close to me. One long termer committed suicide after not being able to get any disability support he needed (he was only in his 20s and very ill with ME, another long termer died from cancer - she'd been too sick to see a dr for new symptoms as she was bedbound with ME and doctors wouldn't come out to her.. so by the time she was able to see a dr a long time later and got a cancer diagnoses it was too late.
The third (another long term ME person) who lived near to me died only months after the hospital kept on throwing him out of hospital saying there was nothing wrong with him (in the 6mths before he died he was given a FM diagnoses but he certainly had ME), he died of organ failure. He never managed to get the ME diagnoses he should had as none of the doctors in our country town would diagnose it (I had to go out of town for my own diagnoses, he wasn't able to drive).
And during the short times he was in hospital before they threw him out again not believing him, he wasn't even getting food there. My father ended up taking him in food as they'd bring in his food while he was asleep and then it would be taken away with him still asleep, so in hospital he wasn't even being fed. RIP Radar
One severe ME person in our country town had gone 30 years without having a dr due to how bad our doctors were in our town with ME people. I myself only managed to a ME/CFS specialist at that time (and then got a GP in another town only because i then had a ME/CFS specialist or they wouldn't see me) because I was getting unconscious collapses so though this specialist wasn't taking on new patients he decided to actually take me on which then enabled me also to have a GP.
@@tanyabrown9839 what a shocking story. Although these things didn’t happen to you, you cannot help but be severely affected by them. Some years ago I was desperately I’ll and in bed 3 yrs. We had 4 young children and all I could do was just lie there all day, all night. My husband worked an hrs drive away. We were on a farm in the country. I don’t know how he coped with all the worry. He’s still here. I’m a lot better since those days, but I dread if he dies before me, because I cannot look after myself. He does all the shopping and cooking. Oh God, please help all of us with this dreaded illness.
At one time my husband begged Drs to come to see me but they refused. Shocking. The only way I got medical attention twice was by collapsing and an ambulance being called and taking me to hospital, 40 kms away. The last time, from that hospital into another in the capital city, where I stayed another 2 mths.
@@tanyabrown9839 A very few people with ME/CFS can have Systemic Mastocytosis, where around 20% of them will get Advanced Systemic Mastocytosis which is a fatal mast cell disease and can lead to organ failure within months to 10 years depending on which variant they get. Mast cell diseases can cause all the symptoms, triggers and hypersensitivity we see in ME/CFS. Systemic Mastocytosis is very rare but Mast Cell Activation Syndromes are very common and have the same symptoms. There is also a third mast cell disease that is also common and was found by studying ME/CFS sufferers called Hereditary Alpha Tryptasemia Syndrome (HATS).
I ran into a frustrated man on an ME/CFS forum a few years ago who had had an ME/CFS diagnosis for 15 years who was told that he had Systemic Mastocytosis and that was the cause of all the ME/CFS symptoms he had.
Look for
Mastocytosis Society Canada, Signs and symptoms of Mastocytosis and Mast Cell Activation Syndrome
As an RN for 30+ years and wife of someone who had significant trauma to his neck that left him disabled and in unrelenting pain? My best advice to ANYONE who might be sick or in pain is BEFORE you step foot in a doctor's office document all your symptoms, pain levels before/after any medication and how it's affecting you and your life. It will do 2 things: 1) You will feel empowered and more in control 2) Your doctor will have to acknowledge the data that you've been responsible enough to collect. At their most basic level they're scientific, data is very important. If you're still treated poorly get others involved! Family, friends and coworkers can validate your complaints...ask them to put in writing what they've observed you struggling with. Request a patient advocate get involved or someone who can help make sure no medical gaps are happening (nice way to say when medicines for pain are being inappropriately withheld and other issues).
I wish they cared. I took data every day for a year straight since that's what the internet said to do, and they did not care one bit.
My experience with the medical area is that unless there is a test which flags for an existing condition or you are dying, you are "normal". Diet, exercise and positive thinking will fix everything and if it doesn't, it's in your head, you don't want to get better, it's your fault and stop wasting their time.
precisely.
Diet, exercise - and antidepressants! It doesn't matter what the illness is - out comes the prescription for antidepressants! I've gone at times to doctors with a dental abscess (dentist refused to see me) and left with a prescription for antidepressants!!! I'm not depressed by the way...
@@LittleKitty22 Geeze I'm so sorry you had to go through that, that's insane 😥 Over in NZ, as soon as you get mental health issues on your record, that will always be the first cab off the rank for diagnoses
Ugh you mean big pharma will fix everything.
Exactly.
I have ME myself. I developed it after a virus when I was just 15 years old, now 22 years later and I’m in a worse state than ever and have had to give up my career and I am housebound. Seeing footage like this on the worst that can happen (and does happen) is so crucial for raising awareness, thank you.
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin, The work of Dr Howard Schubiner, and The Fibro Guy. It IS possible to recover, it takes time but it absolutely is possible.
I’m really shocked that the medical profession are not clued up about this awful condition.
It is sad that medical professionals still have this mode of thinking. They used to think PTSD was a weakness of personality. That women suffered from hysteria. And here we are still doing the very same thing.
Going through this myself has given me a total aversion to doctors and the medical profession. I’m glad to be alive. RIP Merryn & Maeve ♥️
For the journalists: ME/CFS has an objective marker - the 2-Day CPET.
There are 3 blood tests for ME/CFS in development: Electrical Impedence (University of Surrey), Raman Spectroscopy (University of Oxford), MicroRNA's (University of Montreal).
It is your duty to report these things in every story.
agreed that all of those are good indicators, but i don't know if they have gone through all the large scale trials they need to be completely accepted, but most importantly, there needs to be an easy, cheap test like a blood test developed, otherwise people will most likely never get the test or the diagnosis.
Agreed that they need to report more of the science findings to support the statement that it isn't psychological. It would help no end - looking forward to the above tests being moved forward to an actual test that can be used on the front line and is replicable (as yet those tests have not been scaled up, replicated, and used to distinguish ME from other illnesses in larger scale replicated trials which is what's needed for them to be understood as actual ME tests in a real sense.... But I feel like this could be soon!)
I’ve had the 2 day CPET test objectively showing my CFS/ME with PEM. And I have the documentation proving that I wasn’t malingering during my test AND I’ve still constantly battled people not believing me… in the medical community, friends & family. This condition is just horrendous for a multitude of reasons. I was a vivacious go getter before this illness and now 14 years in, and I spend most of my time on the couch. I had to quit my career long ago and I have to pace all day, every day.
Was diagnosed with M.E at 13, 24 now still living with it. Even my parents didn't believe me at first. Managed to fight my way to uni and slowly making a life for myself, but most days I'm still too exhausted to leave the house or even make a conversation. I hope it goes away one day so I can be normal again
Please, seek help through brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
I hope you were tested for vitamin and mineral deficiencies. Also test for hypothyroidism and any adrenal issues.
@olilumgbalu5653 I am positive that someone who has lived with illness for that long has explored those and all available avenues.
That kind of advice is exactly one of the things to not say to people with chronic illness.
@@cbeautifulworld11 Not necessarily. A lot of people go to their physicians to try to find out what is wrong with them and yet they don't get results. Then someone will find a diet that completely turns around their symptoms and their metabolism changes even though the doctors don't even know the information about that diet. Suggesting certain things to help someone is not a negative thing. The person with the illness can look at the suggestion, and be thankful that someone is at least trying to help her.
@Livetoeat171 I have had multiple chronic illnesses, including ME, for over 30 years.
Believe me when I say that it is not helpful to receive that type of advice, especially from someone who is relatively healthy.
There are hundreds of videos available on CZcams which support my statement.
Please watch at least one of them.
I knew someone with ME about 30 years ago, and she occasionally was so exhaused she'd spend weeks at home, and when she went out she used a wheelchair.
At other times she was able to enjoy a more varied and enjoyable life, and able to walk with just a walking stick. We eventually lost touch so I just hope she's ok.
I'm absolutely staggered that the NHS don't have provision for this disease, and actively marginalise those suffering. I hope this report will prompt a full investigation towards a change in attitudes, innovation, support and treatment. 💜
Having ME is like being robbed of your life and nobody realising how hard it is to do simple things like take a shower. My GP showed me the door and told me to buck my ideas up and get on with my life & then added we all get tired. I never went back to him again.
Thank you for this segment. Covid March 2020 as a healthy, athletic 33yo. Struggled working for 2 years with LC/MECFS until I wound up bedridden for months, then wheelchair. Still disabled. Our governments are not only ignoring the millions of us sufferers, but ignoring the threat that exists for everyone. Viruses harm your immune system and finite bodily resources. You are all potentially one virus away from ending up sick too. Forever.
yes, i think there is much that could be learned from understanding the mechanism behind this disease.
Thank you so much for covering ME (and naming it correctly rather than referring to it as just 'chronic fatigue', which isn't even the defining symptom). Studies show ME patients to have some of the worst quality of life scores, even in comparison to other severe well known illnesses. The level of suffering ME patients go through from the illness itself is horrific, let alone the stigma and medical abuse they have to face on top of it. My heart goes out to Merryn and Maeves familys, thank you for your continued advocacy. They should still be here today. We need change within the NHS so desperately. Even the NHS website description of ME is incorrect - the first place anyone, including Drs, would look go to for info on this illness!
What is the defining symptom of M.E.?
@@olilumgbalu5653I think it's probably post-exertional malaise.
@@olilumgbalu5653 Post Exertional Malaise. (PEM)
When you get ludicrously exhausted and flu-like, sometimes pain or brain fog, after a tiny bit of exertion. Often kicks in after a couple of days, and can last weeks.
Eg, I have mild ME, and travelling in a bus for an hour, can result in a day in bed two days later. When I was a bit worse, walking slowly for half an hour, resulted in needing to sleep for five hours, as I was so tired I was nauseous and unable to form sentences to say or assemble water, milk etc into a cup of tea. Infections can trigger it too. I get it for weeks after a common cold.
It's as though all your batteries have been replaced by cheap 'low power appliances only' use ones. So you suddenly go completely flat after five minutes, and take 13 hours to recharge.
I don't know why you have to make it a competition though. I have MS and much the same can be said for it. People often tell me, oh, I get tired too or I get cramps too, like that's all we're dealing with or that they're the same.
@@RebeccaGogovcevshe's not making it a competition. Almost all leading ME specialists have made that same statement
I am from Canada and have had ME/cfs since i was 16. I am 34 now. It took me 15 years to get a diagnosis! If it wasn't for my persistence i don't think i would be diagnosed to this day...
I'm in Canada too. Sick with several viruses as a kid and never been the same since. As far as I can see, the disease isn't a thing here - doctors don't believe it exists. I don't know anyone who claims to have it. I guess we all suffer in silence.
ME / CFS / Fibromayaga / TN are all horrible. Having suffered for years with symptoms and then all of a sudden a trigger made everything so much worse. NHS and The government need to get people onto urgent neurological care. People should not be allowed to suffer like this. Well done to C4 news and Marin’s Mum for speaking up on this.
❤
That is an excellent piece by Channel 4. It's probably the most helpful thing I have seen to date on M.E in the National News. It's such a sad loss of two beautiful young women, though. They shouldn't have had to go through all that suffering...
The 'made up' branding that is attached should be disposed of now. It should have never been there in the first place!
Dr Gabor is actually my Dr, and despite extra long waiting lists here for further treatment. My initial appointment with him was excellent, and he was the first Dr who really listened. He's a credit to Wigan and the M.E. team.
yes but he is only a rehabilitation consultant - ME and all the immune-mediated autonomic conditions are not rehabilitations. They are live illnesses.
@galacticsquig8538 I know he is. But he was the only professional who listened to me. Didn't interrupt me & affirmed that what I was feeling was very much a physical illness. Up to that point, I had been fighting to get help for over 2yrs (like many of us do). And his affirmation and acknowledgement that I was in fact ill is enough for me to give him a word of encouragement and a thank you...
Thank you for airing this. And my deepest gratitude to Sean O’Neil and Clare Norton for advocating for the ME community in memory of Maeve & Merryn. As a person with ME I have been waiting for six years, and I know people who have been waiting decades for this kind of mainstream coverage one of the biggest medical scandals of the past century. We need more coverage about how and why this disease was stigmatized and covered up over many decades. The reasons include medical misogyny, ableism, and stigma against energy-limiting chronic illness & invisible disability.
My cousins family went through exactly the same thing and were also investigated by social services. Her mother had to fight tooth and tail to get her daughter the right treatment. She finally got the help of her MP and got the right treatment. Her daughter now resides in her wheelchair with a carer but it was a horrific 3/4 years
Its Tooth and NAIL... Tail no...
Treatment? What treatment? Didn't know there was one.....I'm living on painkillers and God's grace
@user-ug6xy4vz1q some people respond well to LDN, about 60%. It is hard to find a doctor willing to listen enough to prescribe it, but it is worth testing if you respond to it. Also, keep in mind, that it will not have immediate results, it can take 6 months to start seeing improvements so some people who claim it doesn't work, weren't on it long enough to know for certain. It will also not get you anywhere near 100%, but even just a little better is something (on the ME fatigue scale, I went from a 20% to a 50% and I am so grateful for even that much.) It was my neurologist NP who was willing to look at and verify my research and prescribe (I have found that NPs are generally more willing to listen and research than doctors). Good luck
Poor families. ME/CFS absolutely devastes lives. The hurddles are ridiculous. The attitudes of 'medical' professionals can be astounding. No one in their right mind would want this illness, let alone make it up. I can guarantee if surveyed, 100% of ME/CFS would love and give anything for their old lives back. I desperately want a workable treatment plan that would give me back my health.
Fellow sufferer here. I hear you and couldn't agree more. Sending much love ❤️
Yes. I was describing all these "classic" M.E. symptoms back in the 80s...knowing they sounded illogical but I could only say what was real...I was describing the illness exactly before hearing about it. If I was going to invent something then I'd have invented something more logical.
What exactly is wrong with you? What are your symptoms?
MORE RESEARCH PLEASE
So many people suffering that could be so much happier and more productive again.
Few people this affects were ever “lazy” before, quite often they were very active like I was.
Hugs to all struggling with this crappy bullshit. x
Thank you very much for this coverage. The treatment of M.E. patients is a huge scandal that never got the attention it deserves.
I myself have suffered from M.E. for 11 years now and barely any illness brings with it as low a quality of life as this one does.
I was diagnosed with ME/CFS three years ago. It started with Bells Palsy. I have about 2 hours per day when I can cope with life. Some days I feel that I can get up and run 6 feet! I have a good GP who made the correct diagnosis. Also great staff at the job center who made sure that I applied for the benefits I was entitled to. So I suppose I'm one of the lucky ones.
I'm learning to cope with the 10 hour headaches. 😢 ps I'm 63 year old male.
The infuriating bit is people don't understand that an infection as small as an ear infection or a tooth abcess can start off M.E. & when you have conditions which make you susceptible to infections but you're undiagnosed you've probably got M.E. & you don't even know it
precisely, and i think that there is so much really valuable information to be learned by the mechanism behind this disease.
Some symptoms those who have ME/CFS experience which worsen in a crash, - crippling fatigue, physical pain, brain fog, inability to lift a limb or tolerate sound or light. It is extremely debilitating. A comment on here said it was their “dream” to live like the thumbnail. Those who don’t believe the severity of it don’t acknowledge the symptoms. They just see the consequences of the condition (being in bed, having food brought etc) and assume it must be fun, so they’d wish to live like that too. If they had ME/CFS they’d rethink their assumptions. It’s not “only a bit of tiredness”, or laziness, please listen to those with ME/CFS.
Being stuck like that in bed causes pressure sores and fungal infections and all sorts. People say horrifically thoughtless things.
@@Fizzy5pringwater Exactly. I’ve had many days where I’ve been unable to leave my room and have to lie down, it becomes incredibly painful and uncomfortable.
It is impossible to really explain the severity and wide range of the symptoms of this disease. only the sufferers really know.
@@zw9802 Very true. It’s definitely difficult to explain especially as it’s different for everyone. Mild ME/CFS shouldn’t even be called mild, it completely underestimates how it’s entirely the opposite. As someone who’s currently moderate/severe I’ve had times where I try to describe it to those around me and I genuinely can’t find the words to express accurately how ill my body is making me feel.
I've had M.E. for 22 years and it has destroyed my whole life (lost everything, home, career, ability to work, ability to travel, ability to attend functions like weddings and funerals, friends, family and very little to no support from health professionals). I had one person tell me that being sick was fun because you get to lounge around all day and watch tv! They have no clue!
Thank you Channel4 for such a good segment on M.E.
Help is desperately needed. I’ve now been sick with this half of my life, much of it bedridden or housebound. It’s such a destructive illness, with one of the poorest quality of life scores of most illnesses.
And the scary thing is, many of us with severe M.E are just one event (an infection, virus, medical appointment, hospital admission etc) away from being life threateningly ill. I’m thankful that most days I’m well enough to have my curtains open- it is a privilege many with this illness don’t have, and that I’m grateful for that tiny thing should explain the life we’re having to live.
What does m e stand for?
Social services in the UK are absolutely disgusting. They meddle where they aren’t needed and ignore the cases that actually need help as they lack funding, training and workers lack experience and education to actually help. I’m so sorry to hear you lost your daughter. Research is definitely needed into this kind of thing.
I am a former CZcamsr / Livestreamer with ME. Earliest symptoms 12 years ago. I made comedy-gaming videos for a decade as I slowly lost function. Today, I spend 23 of every 24 hours in my bed, and haven't entertained anyone in a year. At this point, if I overexert, I'll have an hour-long, waking seizure. 85% of us experience tremors, muscle spasms, and other seizure-like symptoms. About 10% of us get full-blown seizures, as a post-exertional symptom.
Leaving a comment for the algorithm.
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin, The Fibro Guy and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
Sending love to you! I have waking seizures too and am diagnosed with Fibromyalgia. They're awful! Really pray things improve for you and you can be creative again really soon!
This is terrible. I hope there’s a cure soon it sounds awful to live this way.
Thank you for still fighting. Did you hear about that lady who filmed her own documentary about ME and then after the documentary she got a neck/spinal surgery fusion that ended up solving her ME almost completely? If u need more help to look into it please let me know
I have heard of you. Hang in there I am so sorry things are that bad!!! I was bedridden earlier in my illness I am in year 4 now, I spend about a half day in bed, with a couple recovery/lay down sessions through the day. I can take short walks and be driven places where before it was way too much stimulous. I still cant work, socialize and suffer crashes from overexcertion but most days now I have been able to stay blanaced so can avoid those crashes. Every once in awile I will have something that triggers an adrenillin push resulting in severe flue like symptoms with collapse and seizure. I stay away from anything emotional, too taxing or physical to avoid those. Hang in there!!! I hope amd trust you have the love and suppprt you need!! I was alone my first few years but now have a loving understanding partner who had I swear helped me heal so mucnh this past year. We need just someone who cares in our lives an understands. I pray for you, for your support system and for your future ❤🙏 ❤
Thanks for covering this disease. I’ve been sick with ME since I was 18. I’m 30 now. I had to quit university, have never been able to have a job ever since, and am too ill to have a family of my own. I’m bedbound/housebound. The losses are horrific.
you're not alone.
Having an unreliable body is something that even your partner and family don't truly understand. It causes severe anxiety and depression. After 20 years of symptoms, I don't fear dying. I'm just continuing to suffer all day and every day.I feel like God has abandoned me, I have lost any hope of even a partially happy life.💔
@@colleenpeck6347please don't lose hope. It would be great if you would contact medical scientific research organisations that may he interested to look and deeply study you're illness.
Thank you for this coverage! Had ME since I was 15, diagnosed at 25, I'm now 32 and I get worse every year. I'm scared.
Please have a look at brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
I'm someone with an invisible disability. This type of invalidation is traumatic and slows recovery. The ableism and disbelief you endure is almost as bad as the illnesses themselves. We're told we're lazy, milking it, exaggerating, imagining it, mentally ill, or seeking attention - both by doctors and people close to us. It's like pulling teeth trying to be believed and understood ... the battle of invisible illness.
Thank you Channel 4 for this story. It’s makes such a difference. People have no idea how devastating, disabling and cruel this illness is.
Us ME patients are too ill to do the work that needs to be done to fight for recognition and research. We need the able bodied population to see us and understand. So thank you for this coverage. Please do more stories on this in future. Long Covid and ME aren’t going away.
Currently in a ME crash listening to this. The daily pain and suffering of so many people is continuously dismissed by health professionals, even close ones. I wish only the best to Merryn's close ones, thank you for spreading awareness.
Lots of strength to all who suffer from this illness. We need to try and stay strong in case there will be treatments.
yes, much thanks to the survivors who are trying to make a change in the treatment of this devastating disease.
I have the illness too for 18 years and I can guarantee any doubters it's not in anyone's head. You could say that for any illness someone is feeling. My symptoms resemble a constant flu and I have to rest after a certain amount of time otherwise I burn out with exhaustion. I'm currently part of the study DECODE for ME which is looking into causes of this illness. Usually people and professionals say it's in people's heads because it's the fear of not understanding it and uneasiness because they don't know how to treat it.
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
It's really unfortunate that a majority of CFS sufferers are actually experiencing psychosomatic symptoms. I'm sure it must be frustrating. I hope you feel better soon.
I go this following Long Covid, cost me a job and a relationship. A lot of Doctors told me it was in my head. It's really terrible and I wouldn't wish it on anyone. It's hard to explain to a doctor when you can't breath or move, but then they tell you, "all your vitals look good". I have much respect for the Doctor who was honest about how when some doctor's realize they can't really treat a condition they state it doesn't exist.
From BBC, Long Covid triggered our MCAS, but doctors didn't believe us
I was diagnosed 20 years ago this May - and still there are members of my immediate family who believe it is all in my head and not really as bad as what I "claim it to be". Long Covid is unfortunately the best thing to ever happen to the ME/CFS community. The funding and research doors that will open up now, will hopefully change the attitudes of medical, government departments and non-sufferers at last.
It was designed to be that way. Smart.
Really important attitudes change. It's beyond belief what people suffer through with this devastating illness, and to be told by the very people that should help that it's psychological is inhumane. The evidence for biological pathology is so far beyond doubt it's actually ridiculous that anyone holds a view to contrary, yet the medical establishment continue to do so in many cases. Incredible advocacy from all involved in this piece.
most doctors don't want to have to think.
It’s disgraceful isn’t it. We have known that the immune system is involved for decades.
Thank you Channel 4 for raising awareness of this devastating illness and its appalling neglect by the medical establishment and the powers that be. This was the best piece of reporting that I have seen on it on television. PLEASE continue the good work and PLEASE let this be a catalyst for change for the better for all those that have been left to languish with ME/CFS.
I have had it for over 31 years, since I was 25, losing not only my health, but my quality of life, independence, career, any chance of having relationships or children. It is utterly depressing to realise that very little has changed with regard to due recognition, or research and treatment options for this illness in all that time.
Thank you to the brave parents for sharing their stories and I hope Mr O'Neill can continue to pursue justice and help for all of us from his journalistic position.
it is depressing, but don't give up hope; i think that between all the long covid patients and AI research tools, a treatment may be near.
@@zw9802 Thank you for your kind words. I do hope so, but many of us long timers gave up hope of anything been done for us a while ago. Long Covid might help there be developments but it sounds as if interest is waning in that; we can but hope though. It's so awful to hear that young people and their parents are still being treated in such a heartless and cruel by the medical establishment; it was happening 30 years ago and it appears nothing has changed.
I'm in Scotland. We had one ME specialist nurse, in the small county of Fife, but no specialist services in the rest of the country. Sadly he has passed away, but there are no plans to fill his post, so we are left with nothing, yet again.
I dont tell drs about having a ME dx anymore because they immediately dismiss me. It took four years to get a dx of spinal stenosis, 3 crushed discs and a congenitally narrow spinal chord. The orthopaedic surgeon I first saw literally said it was in my head. When drs and nurses started coming down with long covid I admit i felt zero sympathy for them and thought lets see how much they are believed.
I think part part of the problem with ME is that until you KNOW someone with it, or deal with someone with it, it's really hard to understand and accept that its a real disease.
I don't have it, but i have a close freind with it and watching them from one day to the next, the sudden cancellation of plans due to post exertion malaise because something unexpected came up the day before. Knowing to leave said freind alone for several days to a week to recover from a trip into town for meds and a cuppa. Watching their gradual deterioration over the years from needing onla day ir two to recover from a big weekend to needing several days to recover from a brief outing Their battle to get signed off as long term sick and disabled. Actually, once they were signed off, they seemed lighter, because they'd finally been taken seriously. Theyd finally been heard and understood by the ones with the power. Once the stress of that was out of the way, they were almost a new person because most ot theirenergy wasn't being wasted worrying about the assessments etc. Stress for people with ME can be absolutely devastating due to their limited available energy.
"until you KNOW someone with it, or deal with someone with it, it's really hard to understand and accept that its a real disease. " Why?
@@satsumamoon because people are self-centered arseholes
What IS m e?
M.E myo something encephylitis@@katedaniels9623
The arrogance of doctors know no bounds. If they don’t understand something, then it must all be in the patients head. God forbid they have to admit that they have no idea, but their egos won’t allow it.
yep, if they don't know what it is, and there isn't a quick east test to identify it, then it doesn't exist. it's no wonder that many ME patients just stop going to doctors. personally, i try to use my available energy to do whatever i can do for myself, because you definitely can't count on the medical system.
And multiply that arrogance by ten when it is an illness mostly suffered by women - IBS, So called FND, fibromyalgia, ME and many more.
Just a mere 2 weeks ago I was diagnosed with a Very Very Rare Genetic Brain Disorder called Pontocerebellar Hypoplasia •basically it’s the degeneration of my Brain Stem• & when I was in the hospital some drs & nurses have never heard of this condition. It sadly is Terminal but I am still fighting. It’s a very scary thing. As far as the Drs know I am the only person who is still alive that has this condition
@@GoldRangerFanGirl35 , keep on pushing. Everyday is a blessing and no one really knows when their time is up. Terminal can mean a lot of things. It could mean 6 days, or it could mean 20-30 years. I wish you nothing but peace and tranquillity through your difficult journey. Stay strong and stay positive, there are such things as anomalies after all. Nothing in this life is guaranteed, just take it day by day, then week by week, followed by month by month, then year by year.
Incredible to see footage like this on a national news channel. Thank you so much to everyone involved for shedding light on how serious and devastating ME can be.
Bless these parents for speaking up I have ME in the states we are treated crappy too. I have no doctor to guide me through it and it's scary. I want answers. We all deserve respect and understanding and care,.
My granddad was diagnosed with ME when he was in his 30’s and he hasn’t been able to work since.
What does m e stand for?
@@katedaniels9623 Myalgic encephalomyelitis
I have M.E since 2005. I was gaslighted for years. It really is a debilitating condition. While not as bad as Merryn, within 2 hours of waking - I'm crippled with fatigue and brain fog and need to nap for about 2 hours before it subsides. Some days are better than others, but every day is really difficult either way. Some days I just get randomly hit with really strong bouts of fatigue out of nowhere. Other days I can just about manage to get through the day ok.
It's not just the fatigue that's an issue. It's the unreliability of your body. Not knowing when you're going to crash. And then there's the neurological issues, memory loss, etc.. I did two RBAN's tests and while some parts of my memory were fine, some were in the 30th percentile. I'm afraid to bump into people in public incase I forget their names (which is very common). I can watch TV shows for seasons on end and still not remember any of the characters names. It's annoying because I'm otherwise quite intelligent. It just feels like my brain is operating on fumes.
It's a horrible disease and the only thing worse is the decades of neglect and gaslighting by the medical community. Lots of studies are now showing severe issues with energy metabolism in ME patients, and a host of other abnormalities. Hopefully soon we'll have a catch-all biomarker to diagnose it.
I hear ya! you have written this very well, it certainly sums up a good amount of what we go through. From one fellow M.E. sufferer to another, thank you for taking the time to post. 🕊
i know exactly what you're going through; i think that other patients are the only ones who really know how devastating this disease is. but i too believe that understanding and some kind of treatment may be possible in the reasonably near future.
So is it partly a mitochondrial disorder?
@@2degucitas that is certainly part of it, yes. There are other theories/aspects such as immune system fighting enduring viral infection, autoimmune aspects, brain inflammation.
@@louisehogg8472 I did some reading about it
My deepest appreciation for everyone who participated in this documentary. Sinceramente, a person with ME in México.
What is it, what does m e stand for?
I had long Covid for nearly 2 years … it was the worse experience ever . It sent me into a depression I had never known . My life changed all of sudden you are disabled . Thankfully I recovered . My heart goes out to all of you with ME /LC
A public inquiry into the medical treatment of people with ME should be launched.
Thanks for this. We really need more media attention. And a full doc on the scandal of the pace trial. I have severe ME/CFS and no QOL - things need to change, people have suffered for decades.
The PACE TRial and Simon Wessley
A very good report on ME. It’s basically the same situation in the US. It really comes down to research funding, rather the lack thereof. In the US the NIH spends a measly $15M per year on ME, but $125M peer year on MS. MS is a disease with similar symptoms, but less than half the number of suffers and it has a better quality of life than ME. Once a biomarker was discovered for MS, it gained tons of research money which led to treatments. It also legitimized the disease in the eyes of the public, Drs, researchers, health agencies, social services and governments. Legitimized it to such an extent that most people today don’t even recall a time (as recently as the 1980’s) when MS was thought to be a psychosomatic (now known as Functional) condition. Until ME has a biomarker, it will remain a much misunderstood condition relegated to the “functional medicine” trash heap. We need funding at levels that match the disease burden and severity, NOW.
i think there may be hope for a diagnostic test soon, but yeah, i don't think anything will change until then.
Well said. Using MS and Parkinson’s as case examples always seems helpful when I’m explaining this to ppl who don’t get it. They usually don’t know the history, but once they do a light goes on.
Here in germany there's over 15 competence centers for MS and only 2 for ME. And one of them is only for children and teenagers. We're lost of care!
Please have a look at brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
I remember MS was basically discovered by its biomarkers (lesions in the spinal cord and brain stem) in autopsy studies by anatomists in the 1860s.
My heart goes out to this family and all the others who have lost family through this condition.
I have CFS for several years now and haven't had any help from NHS. Your experience is invalidated and made to feel it is in your head. I will always remember this, a GP told me that NHS treats diseases... basically because NHS tests not showing anything, I should go home and when it reaches NHS classification of "disease" to come back.
I am so grateful for Dr Myhill book on CFS/ME. That was first time I felt understood and heard and i started investigating root causes that NHS Drs will not check - viruses, heavy metals, lyme disease etc. Guess what Dr Myhill has been hounded by the establishment...other Drs/GMC. The complaints against her where not from patients she helped but from other Drs who didn't like her thinking outside of the box. The other functional medicine/integrative/holistic Dr was Dr Terry Wahls - her book of her experience with MS helped me a lot. She was also attacked by the establishment for researching and thinking outside of the box.
I agree with previous comment - the medical gaslighting must stop.
Even when NHS doctors do believe that you’re ill, they don’t do anything to help you. After I was diagnosed with ME, the same doctor told me that there was no point referring me to a chronic fatigue clinic, as the waitlist was multiple years long and they wouldn’t be able to do anything to help me anyway. I understand that there are no known treatments for the condition, but being abandoned by the NHS like that really hurts. We are left to fend for ourselves and inevitably end up getting worse in most cases.
@@prescottperfection6354 It's true that the ME/CFS clinics offer little help. They mostly teach you management strategies. It took my GP 2 years to diagnose me and it took another 6 months to get a referral to a ME/CFS clinic (I had to ask for one and didn't even know of their existence as this was back in 2005). I spent another 6 months on the clinic's waiting list and in the end most of what they taught were strategies I'd already learned on my own through trial and error. What I found the most useful was their tips on pacing and the fact that they confirmed my diagnosis. I was then discharged back to the care of my GP who knows little to nothing about ME and whenever the subject I'm given the option of a re-referral to the clinic (even though it wouldn't help). When I've contacted the ME/CFS clinic for advice they've told me that they've done their part and my ongoing care is my GPs job. In the end no-one takes responsibility and they just ping pong back and forth. Accessing help from other professionals (OTs, Social Services etc) has been an uphill battle as many feel unqualified to help me and they too tell me to get a re-referral to the ME/CFS clinic. They seem to thing that managing the illness means that you can lead a somewhat normal life which may be true for some but not for others. They therefore believe that I must not be managing my illness correctly so erroneously think that the ME/CFS clinic can do something more to help. I keep going around and around in circles trying to get support and it's exhausting. If you believe that being seen by an ME/CFS clinic is pointless then I suggest contacting Action 4 ME and accessing the booklet they have on pacing. I found this is what helped stabilise me the most. These days the clinics have also added mindfulness to their protocol. Therefore, if you can learn about pacing and mindfulness this is probably the most you'll get from the clinic anyway. These tools don't produce miracles but they are useful and, if nothing else, help stop it getting worse. Also, some people have found brain retraining a game changer. I'm looking into this at the moment so cannot comment personally. Wishing you all the best.
Thank god this beautiful young woman, Merryn, was so slender. So many with chronic fatigue are blamed, dismissed and ignored for being overweight or obese. As if they have no medical condition. Merryn has made people take another look. God bless this woman and may she rest in peace.
That's me. I have lipedema, which makes me huge but is not the same as obesity. I told doctors for years that I ate healthy and exercise regularly but cannot stop gaining weight. Their advice was simply "diet and exercise". They just didn't listen. Now I'm nearly 40 and around 400lb and only just starting to get treated for this. So many years doctors just accused me of secretly binging which would be IMPOSSIBLE for me as I've lived with family or my husband my entire life and I don't drive so I can't go out and get secret food, don't have a separate bank account to order food in secret, and my husband and I both work from home so we're always together. Not that my husband would care if I ate anyway, because I undereat all the time because for my entire life I've been accused of overeating! I eat 1600 calories a day or less for 20 years and I've gained 150lb in those years. It's affecting my life a lot now as I'm physically uncomfortable and I don't fit in standard seats so I'm actually scared to go out and do things because I have to worry if I will literally fit! For example restaurants, if they have chairs with arms or booths, I might just be humiliated if I don't fit so I avoid it altogether. Now that's affecting my husband and it makes me so upset. I hate feeling like he can't live his life because I am scared of things and people. People stare at me, no matter what I'm doing. I just feel like a monster. And wouldn't you know it, my insurance rejected my access to medication that would help me. Why did they reject it? Because I DON'T have diabetes, high cholesterol, or high blood pressure. Nevermind my discomfort and anxiety, the only thing that matters is obesity related illnesses that I don't have because I'm not obese! My cholesterol is 119, A1C 4.4. So all that secret eating must be really healthy huh..
My son had chronic fatigue after he had glandular fever. It lasted a few years, very difficult to deal with. He felt lucky that he didn't have pain with it as some people do. This poor girl seems to have had a really severe dose.
According to the poorly run statistics by the poorly run clinics who are psycho-social and not biomedical only 5% get full recovery to pre-ME state. 25% go to or remain Severe or worse like Merryn and Maeve and the rest are fortunate to establish some sort of improvement but often it does not go away.
Please have a look at brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
Thank you so much channel 4 for this outstanding coverage on this terrible neglected disease. I have developed ME/CFS and POTS from Covid, and have been housebound now for almost 4 years, which has cost me my career that I spent years training for. It is shocking that these poor women were left to die due to total ignorance by the medical profession. Imagine being denied palliative care?? What we really need is an indepth expose as to why these attitudes persist. The ME/CFS community knows all to well why this has happened. It is a huge scandal involving collusion between psychiatrists such as Simon Wessley, the DWP and insurance companies. It is well documented online. This is an even bigger scandal that the Post Office because this has had ramifications globally. Someone needs to be brave enough to expose this decades long scandal.
Absolutely. I also have LC and it induced MEcfs in me too. One of the most heartbreaking realisations I had when I first got ill was that infection associated illness like ME have been around for centuries, yet efforts to find treatments have been so minimal. And there is no suitable care available on the NHS. If ME patients were taken seriously decades ago, these two young women (and the many others we have lost) might still be with us and the suffering of so many with ME and LC could have been avoided. It’s the biggest medical scandal of modern times.
I have FMS my husband left me and my children nearly got taken from me because the school did not beleive me.
I'm at the tail end of my recovery journey now, back out in the world and doing well. If you or anyone you love has ME/CFS I would highly recommend the following resources: The Optimum Health Clinic, The work of Irene Lyon, The Curable App, The work of Jim Prusack, The work of Rebecca Tolin and The work of Dr Howard Schubiner. It IS possible to recover, it takes time but it absolutely is possible.
Well said Wildgardens.
@@SarahHope883 Yes its terrible to think people have been left for decades to just rot at home and in some cases like these poor young women left to die. Its such a scandal that needs to be blown wide open. Once you start digging into the history it really is quite shocking especially when you consider how horrifically ill those at the most severe end of the spectrum are. Breaks my heart, like you say these 2 women could still be with us if more was done. Sorry to hear your dealing with it too, its such a rough journey with no end in sight, let's hope we get some answers soon!
M.E at 15, still got it now, at 48.
It is appalling that ME sufferers are not believed. I have watched my friend go down with this. It affects women a lot more than men, hence a lack of research. Disgusting. I'm so sorry for your loss 😢
Please seek help through brain retraining programs like DNRS, GUPTA among others. It's a limbic system dysregulation which in turn affects the function of autonomic nervous system. You'll find plenty testimonials on youtube to inspire you. You may also benefit from ladies Raelan Agle and Heal with Liz who recovered from similar dis-eases themselves and are now interviewing others who likewise found healing through neuroplasticity. People, please, never give up! You are able to heal. Blessings ✨🙏✨
I am deeply sorry about the loss of your wonderful daughters. How you were treated is heartbreaking. 💔
Thank you for covering this, education like this will help to change that attitude. Please consider giving it coverage in future
Thank you for raising awareness of this devastating condition. ME desperately needs to become a research priority in the medical field
What does m e stand for?
I really feel for these people, my son has M E , and I know how much it affects him , it's heartbreaking watching him suffer !
Thank you for reporting this so sensitively.