The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

"Graded Exercise Therapy causes harm in ME/CFS. Everyone knows that, right?" (blog post)

Discussion in 'General ME/CFS News' started by Tom Kindlon, Sep 4, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,377
    Likes:
    8,244
    September 4 blog post

    by iamclarkellis

    https://autodidactauthor.wordpress.com/2017/09/04/get-causes-harm-everyone-knows-that-right/

    [As well as the issue in general, a lot of this is about Keith Geraghty and colleagues' recent paper, "Myalgic
    encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys". A quote from a paper of mine is also used. Note that it is not saying that everyone is harmed by Graded Exercise Therapy. Tom]
     
  2. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,178
    I thought this thoughtful post from Facebook was worth highlighting:

    https://www.facebook.com/TomKindlon...=893717710776355&comment_tracking={"tn":"R0"}

    Peter Trewhitt
     
    Cheshire, MEMum, slysaint and 9 others like this.
  3. Wonko

    Wonko Senior Member

    Messages:
    1,439
    Likes:
    4,742
    The other side.
    I'm no capable of reading all of that ATM (I'll come back to it hopefullY) but I read/skimmed enough to get the gist :)
     
  4. ClarkEllis

    ClarkEllis

    Messages:
    55
    Likes:
    569
    I was pleased to be able to quote your paper in my blog @Tom Kindlon I thought what you wrote was very thorough and professionally done and as I explain in my blog we need more work like that on this topic.
     
  5. Mithriel

    Mithriel Senior Member

    Messages:
    673
    Likes:
    770
    Scotland
    Melvin Ramsay wrote that ME is defined as "gets worse with exercise" so if a patient gets better with exercise they don't have ME.

    When I joined the MEA in the eighties there was an article called "The Glass Ceiling" which was about how people with ME can get a bit fitter but they reach a point where they can go no further. It could be that patients in the study have just reached that point.

    My own experience is that I can get a bit fitter by very gradually increasing exercise. It took months but I finally managed to get out my back door to a garden bench where I could sit in the sun for 5 minutes. I think Mark Van Ness has spoken about increasing that sort of fitness to achieve something you really want to do. No way are we talking "recovery".

    I also found the hard way that we can increase out fitness quite a lot. When I was still moderate, I had to climb a steep hill to get my son to nursery. I got fitter till I could go up it no problem, I was able to do a lot more, but actually, it was just masking my symptoms till one day I just stopped being able to walk more than a few steps and needed a wheelchair ever since.

    Exercise and exertion are so bad for us that it should be caution all the way.

    Mithriel
     
    MEMum, snowathlete, AndyPR and 3 others like this.
  6. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    463
    Likes:
    605
    @Mithriel

    GET is exactly the wrong thing for us, probably there is no debate about that here.
    Exercise itself is more complicated; I found that it had very different effects during different phases of the illness. Sometimes it helped, other times half as much definitely harmed. Many times it improved my quality of life, at other times it did not. What it never did is fix the underlying illness.
     
    MEMum, AndyPR and Murph like this.
  7. Mij

    Mij Senior Member

    Messages:
    2,269
    Likes:
    5,028
    I can get out and walk when I'm having a non busy day and going through a 'good' period. The only thing that walking does to "help" is that it helps me feel less stiff. I stay within my boundaries though and have never been able to increase my stamina in 15 years.
     
  8. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    463
    Likes:
    605
    A funny thing: about two years before what I thought was a sudden onset, I was lifting weights but had stopped getting any results. To address that I got a trainer at the gym and worked out according to the tips he provided, which seemed to be pretty good (a good trainer sees a lot of people and figures out what works). He commented that my body seemed to be locked up and just refusing to gain strength or size. At the same time I noticed that I needed more sleep than I had previously, but it was nothing dramatic. Yet.

    I suspect my sudden onset was not, it had been building for 20 years. There were warning flags but I had no idea what they meant.
     
  9. Mij

    Mij Senior Member

    Messages:
    2,269
    Likes:
    5,028
    @HowToEscape Was the 'sudden' onset viral? Were the warning flags all to do with exercise? Interesting. There are other members that thought their onset was sudden but realized later that it had been building up way before. That is the dangerous part- the not knowing until . . .
     
  10. Solstice

    Solstice Senior Member

    Messages:
    614
    Likes:
    2,060
    Sounds familiar. The not getting gains from fitness. I always thought my M.E. started at 19 yo. Till the person treating me pointed out I was likely already getting sick at age 13. There were numerous red flags. Getting a lot quieter at school, my grades plummeting, at football at age 15 I had to stop a match because of trouble breathing, at age 17/18 I would dry-heave several times after football-practice. Who knows what could've been done if it had been picked up earlier and who knows what could've been done if I had known about pacing and the ill-effect of GET at age 19.
     
  11. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    Similar to me. I consider myself to have had both sudden onset and gradual onset because although I got suddenly much worse to the point where I had to give up work entirely very quickly, I had been struggling for years and years. I often used my holiday entitlement at work just to rest, I had sleep problems that got worse over time and my stamina just went downhill even though I was exercising right to increase it.

    I can't exercise now at all. I used to exercise all the time.
     
  12. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,704
    UK
    If a large number of patients, all taking the same medicine, repeatedly reported harmful excacerbation of their condition, what would the reaction be if the default accusation by the medical establishment was of patients having false illness beliefs, instead of the possibility (at least!) that the medication might be causing harm?
     
  13. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    463
    Likes:
    605
    I will have to be short because I'm zonked right now but until I can write a full reply:
    1. I had no viruses that I was aware of. it felt like I had a new type of flu, one without the nose, throat or stomach symptoms. The cheapie I went to did not see any virus.
    2. None of the warning flags except the stopped response to weightlifting were due to exercise.
    In previous years exercise had a profound beneficial effect, but it had to be of high intensity. I had mysterious intervals of feeling like I was walking through molasses, but chalked that up to depression.

    For reasons I can't entirely explicate, I believe many of us had a long early phase with episodic illness, but without our system being fully broken. Those episodes nearly mimic other diseases and they are not on medicine's diagnostic map. Perhaps some combination of additional insults to the system and aging pushes it over the cliff.
    This is one of the rare cases where folk wisdom is wise and medicine is blind; ask someone from a traditional culture and they'll say that if you feel exhausted and weary you need to stop whatever you're doing and rest. They won't say "go to a psychiatrist".

    The world should have listened to Melvin Ramsey.
     
    Wonko and Mij like this.
  14. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    463
    Likes:
    605
    At least you played football while you could! I wish I'd known how important team sports were in high school, although I could never throw or catch the damn thing (American football) so that couldn't of been my support. Too short for basketball, etc.
     
  15. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    463
    Likes:
    605
    Before it all snapped did exercise make you feel stronger and better? Two years before crash I was doing triathlons. Short ones, not an Iron Man, unfortunately.
     
  16. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    463
    Likes:
    605
    Glad I live in the USA. The federal government did us no favors, but individual doctors were and sometimes still are free to call'm like they see'm.

    They did silently cut federal disability for us around 2012, and that's a program paid for by tax deductions out of your payroll, it's not welfare. Funny thing, that cut happened right after the plan to Federalize much of healthcare ("Obamacare") took effect.
     
  17. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    Sometimes but not at others. I would say yes, most of the time, but despite working harder than my peers I achieved less, and I could never understand why.
     
    HowToEscape? likes this.

See more popular forum discussions.

Share This Page