83. Symptoms of ME / ME-symptomen -Dr. Byron Hyde
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- čas přidán 4. 10. 2016
- (For English description, see below)
In dit college behandelt Dr. Byron Hyde de volgende vragen/onderwerpen:
0.12 De kernsymptomen van ME in 1905
2.05 Verschuivingen in inzicht over ME en CVS
5.15 Uitsluitingsziekten en het belang ervan
7.47 Andere met ME verwarde ziektes
Disclaimer: Deze video bevat geen diagnostische of therapeutische informatie over uw eigen medische situatie. Dit kan nooit ter vervanging dienen van een persoonlijk consult. De eventueel door de spreker genoemde medicijnen noemt hij op eigen verantwoordelijkheid. Leg vragen, klachten of symptomen tijdig voor aan uw behandelend arts. (Lees meer op www.wetenschapvoorpatienten.com)
English:
In this webinar Dr. Byron Hyde talks about:
0.12 The core-symptoms of ME in 1905
2.05 Shifts in insight in ME and CFS
5.15 Exclusion disorders and their importance
7.47 Other diseases confused with ME
Disclaimer: This video does not contain any diagnostic or therapeutic information about your own medical condition. It can never replace a personal consult. Names and trademarks of drugs and application(s) of the same which the speaker may refer to, are referred to at his/her own responsibility. Notify your attending doctor in time about any question, complaint or symptom you might have. - Věda a technologie
Ben al zo 12jr. ziek en afgelopen februari aanval gehad. Dikke twee maanden revalideren, maar zit momenteel wel aan het bed gekluisterd. Kan niet veel, heb er hulp voor. Me huisarts herkent het niet. Neem me niet serieus en schuift het af op psychosomatisch. Deze praktijk kickt toch al op de psychische kanten. Lijk wel dat ze een mooi business model hierin heeft, waarin ik niet in past. (Im pistoff) Recentelijk gaf me huisarts aan: "dat ik dingen moest ondernemen, zoals: lopen, fietsen etc." Ik gaf aan dat ik het allemaal doet, maar geen gehoor... waardoor ik de handdoek ik in de ring heb gegooid en bij de volgende aanval laat ik me gaan... :)
-Ik vecht niet meer! Heb al vele vrinden verloren ermee en nu me huisarts nog. Met zware periodes lig ik uren, maar ook uren en dagen onder de warme douch... om me lichaam een beetje op 'temperatuur' te houden.
Heb voorheen in het design gewerkt. We hadden als bedrijf vele deadlines te behalen. Museums ingerichte, care, gerechts-gebouw etc. Was een vitaal, energiek, zeker zin atletisch gebouwd/persoon die de kar voortrekte... Nu kan ik maar weinig en vaak alleen de muis van me pc. te bedienen om zo nog enig 'leven' te ervaren. Soms, na een 'goed' dutje gedaan te hebben: kan ik zo text als deze zijne schrijven... maar dat is al sporadisch.
Maar och; omdat ik veel lezingen volgt; heb ik gecontrasteerd: dat de wereld anders in elkaar zit: dan ze ons voorleggen....! Kijk maar eens op me youtube-kanaal... Je kan het niet geloven! (Er komt nog veel meer bij!)
I have had M.E since the age of 20 I fell ill with a mystery illness and it was a sudden onset with a dangerously high fever which lasted 3 days an upper respiratory flu like illness. I never recovered my health. I was young super fit and healthy and very career driven pursuing a career in music as a singer songwriter. I became very sick and found myself often bedridden for days at a time. One symptom that was prevalent was photophobia an inability to tolerate any light even dim light caused me excruciating eye pain leading to migraines and noise sensitivity which caused ear pain and body pain. I was sent to a psychiatrist to rule out anything emotional. But he said that my symptoms were physical and not psychological but I was battling panic attacks because of it. So he discharged me and referred me back to my doctor who diagnosed M.E or he initially said Post Viral condition. Well I’m 49 now and more than 5 years ago I began to have issues walking on and off. Yet I had hoped that I was fully recovered. My Gp did some neurological tests in her office- I failed everyone of them. As she noticed that I had severe muscle wasting all over my body especially my hands and upper legs. And I had periods where I had drop foot and toe walking.
I did not want to accept that I still had the disease but deep down I knew. I was determined to push myself because I wanted to do so many things including starting my own walking group and finding part time work and eventually a full time job I wanted to go to college. Even start horse riding again. But I suffered a mental breakdown after a very traumatic event and in the end up although M.E is physical and caused by an enterovirus, I believe, a stressor or major trauma can exasperate the disease and I found myself completely paralysed from the neck down in a hospital bed unable to move hooked up to a catheter and very sick indeed. I have had M.E paralysis before and usually kind of recovered. But this time I didn’t fully recover. I’m barely able to get out of my hospital bed at home. I’m unable to walk at all. I use an electric wheelchair because I don’t have any upper body strength to self propel on a normal wheelchair. I use a hospital bed to help get me to a sitting position so I can get out of bed onto my wheelchair. The physical pain is like nothing on earth! I was given morphine in hospital for the pain. And it’s the best stuff on top of my strongest co codamol however with the powerful dose of morphine that they gave to get rid of the bone pain muscular pain and nerve pain I was told to lie flat for 3 hours. They gave me oxygen and kept checking my pulse and blood pressure repeatedly looking worried. I was also unable to speak. But it’s the first time I wad more or less pain free in years. I think you learn to live with chronic pain and find a coping mechanism. I am a Christian and God has been my Rock and I rediscovered art several years ago. I found it beneficial because I don’t have to think much. It’s been a great release and very relaxing as long as I am well enough to sit upright in my wheelchair. I’m very impaired cognitively speaking. Other symptoms are tender lymph glands even on the elbow creases and the back of the head on either side when this happens it a red flag to stop and go straight to bed. The glands on my elbows can swell up like golf balls and are solid and very painful to pressure or touch. Photophobia is often severe . Drooling saliva uncontrollably when in bed. If relapsing sore throat flu symptoms and complete vertigo, and difficulty swallowing even tiny sips of water. They almost tube fed me. I use a baby bottle in bed to make sure I keep my fluids up preventing chocking and spills and also meaning keeping me rested without having to exhaust muscles having to sit up constantly which would lead to a rapid deterioration and an unnecessary hospital admission . I have had difficulty chewing if I am very sick. And speaking and following speech can be impossible. I won’t be able to form words and my speech will sound slurred. I have been so used to living with my condition that I have learned to manage it. Because of my faith I would say that I never feel alone. I’m comforted and I manage to remain fairly positive. Of course I am not perfect and I’m like everyone else where I have my moments. Especially if I am forced to stay in bed for days weeks at a time. I get mad at not being able to do stuff. I cry sometimes when the physical pain is too much to bear. But I tend not to dwell on my illness or even talk about it. I tend to prefer to just get on with it and try to focus on other things regardless of what I am facing. I enjoy music still and hope to be recording my songs again. But I’m struggling with coordinating my fingers correctly. I’m hoping it will pass. So that’s my story. I only discovered this channel and subscribed after googling enterovirus and M.E I am amazed at this and will continue to watch. Awesome videos and I am sure I will learn lots about my illness
Yup its enteroviruses
How do you know? If Dr Hyde is correct about enteroviruses, then we would have a cure for ME soon. @@ryanneilcarr
I have every one of these symptoms.
I have all of them and some, some days weeks I can't function at all and want to end it......
Some patients do have all of those things
I very clearly have ME. Have since I was 13 and really hit at 14. I had progressive exhaustion w/ repeat colds and then finally a flu-like illness which I have never been the same since. I got POTS simultaneously. And I also have Type 3 Joint Hypermobility Syndrome or a form of EDS. They can definitely co-occur. Also, Interstitial Cystitis could totally be egged on by a virus but is an autoimmune condition from my understanding and there is now a med for it. I've experienced every symptom listed re ME almost simultaneously or at close points in relapse...including expressive aphasia, trouble absorbing and comprehending speech for about a week at my worst also. And about 1-2 mos interstitial cystitis at my sickest. No infection. I do all I can w/ diet and supplements to tamp down inflammation. Naviaux has very interesting info re many genes in common w/ autism and ME (sensory processing, perception). Both are spectrum disorders. Both seem to involve the cell danger response. This also is a terribly interesting theory. See below. I found the latter info in the Facebook post's comments section. Theory by a disabled MD with mult chronic illnesses:
Dr. Naviaux has researched autism and is now working on ME/CFS. This other lady Dr has this similar and related theory w/ other chronic illnesses. Excerpt from Dr. Naviaux of UCSD at Stanford ME/CFS Symposium Aug 12: m.facebook.com/story.php?story_fbid=368571696894858&id=180205575731472
www.rccxandillness.com
Condensed info from the above: me-pedia.org/wiki/RCCX_Genetic_Module_Theory
interesting interview, thank you. however, i find this terribly confusing, perhaps because i am not a doctor, or perhaps because i am fogged.
not able to listen again for health reasons, but did he say dysautonomia pretty much covers all symptoms? what about all those symptoms in meicc [does he maintain meicc is not m.e. -- then what is it!?]? what about infections? what about autoimmunities -- tons of people have hashimoto's or similar; plenty of people including myself have intrinsic factor antibodies, ds-dna, etc....? what about prostatitis? what about even interstitial cystitis? mcas! vascular! tons of us have almost everything on that interesting old list of symptoms (new to me, thanks for mentioning, kinda mind-blowing) and ALSO can bend our fingers back 90 degrees, etc. i could continue.
there are TONS of symptoms frequently mentioned by sufferers, and severe sufferers often have symptoms that affect nearly every body system. i can't believe that everybody in this category are just unlucky victims of multiple multisystem diseases simultaneously. so does he have a narrow definition of m.e.? is there a disease that causes m.e. AND those diseases? or have i got the wrong end of the stick? btw, the 1934 atypical polio paper did not subjectively feel to me like it was necessarily m.e., but this 190x list does sound quite close. anybody who can clarify or has similar questions, please drop me a line at samologist which is at gmail dot com. i'm the author of the kafka pandemic.
what is with OI?
did early ME patients have OI or not?
Yes