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M.E. and exercise – when will they ever learn?

Discussion in 'General ME/CFS News' started by Bob, Dec 12, 2014.

  1. Bob

    Bob

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    This is a candid editorial written from the personal perspective of living with ME, by Neil Riley, chairman of the UK's ME Association, published in their quarterly membership magazine "ME Essential".

    M.E. and exercise – when will they ever learn?
    Our chairman, Neil Riley, wrote this in the winter 2014 edition of our membership magazine, ‘ME Essential’.
    http://www.meassociation.org.uk/201...ial-in-our-winter-2014-me-essential-magazine/

    Read the rest here:
    http://www.meassociation.org.uk/201...ial-in-our-winter-2014-me-essential-magazine/


     
  2. worldbackwards

    worldbackwards A unique snowflake

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    I got that through the post and, whilst I feel for him, it does basically indicate how people are, which you might think he'd have learned by now. The point is that it's not as if his nearest and dearest doubts him, they just don't know anything about it. Most people really aren't paying that much attention to anything that doesn't directly affect them.

    Especially if someone lives on the other side of the world, I doubt she gives his illness much of a thought. I rarely see my own sister and I certainly wouldn't expect her to know the ins and outs of ME politics and how it affects treatments. And she's only in Milton Keynes. It's one of the nice things about PR: you don't have to spell anything out for anyone.
     
    Last edited: Dec 12, 2014
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    The belief is everywhere, and some people believe everything they read in the papers. It has become a meme, and until the correct message gets into the health systems (not only of the UK) we just have to keep combating it with the facts.

    Not easy when you are already struggling to do what you have to do, and when people just give you 'looks' so that you don't know whether they understand/believe you or not. It wears you down.

    Exertion makes M.E. worse.

    Is there a catchy way to say that, that can become a slogan - something memorable?
     
  4. Bob

    Bob

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    Clearly, Neil is aware of this phenomenon, and is sharing his own experiences about it as an editorial. It wasn't a 'news' item!
    I thought it was a well-written account of his personal experience.
    Sure, we're all aware that this happens, but I think it's helpful that a chair of a leading ME charity has the same personal insights of the illness. That probably partly explains why the ME Association does such good work.
     
    Last edited: Dec 12, 2014
  5. worldbackwards

    worldbackwards A unique snowflake

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    I was looking at one of those MEA wristbands ('It's real, it's physical, it's ME!') the other day and thought that, the more we go on about it, the more desperate we look. A genuine catch 22.

    Perhaps so. I don't really get out or have to deal with people much, the benefit of which is that I don't get a lot of this now, but I know how infuriating it is. I've got a lot of time for Neil Riley and the MEA as well (and think they get a lot of unnecessary crap off of people who ought to know better). But when it does happen these days, it isn't the punch in the gut it used to be, more a creeping sense of dread that they'll go on about it ('Why don't you just…?'). You do get used to it and, dare I say, internalise it a bit. Whilst I know what the score is, a bit of me feels that I really should have had the good sense to get a 'proper' illness.

    However, if some idiot tells me 'you can blitz it with vitamins' again, there will be violence.;)
     
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  6. snowathlete

    snowathlete

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    I think many of us have been here. There just continued to be a massive gap between the reality of the disease, and the perceived reality that everyone else thinks is representative of the disease based on all the misinformation, lack of personal experience of serious chronic disease (most people's reference for illness is a cold or flu). It's so frustrating. We need to continue to talk about it. And at some point hard reliable facts will come out of research that will make it easier to get there.
     
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  7. melamine

    melamine Senior Member

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    Is one of the reasons GET, for instance, is still given credence because so-called CFS experts like "Tony" Komeroff at Harvard are still promoting it in public spaces? And why when he is asked about it in a CFS forum does he refuse to answer publicly, saying "too political, talk to me afterwards about it"? Maybe not significant, but one more drop in the public relations bucket.
     
  8. Sidereal

    Sidereal Senior Member

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    Has he promoted GET? I have heard him promote CBT. Like Natelson, I've always felt that Komaroff was another wolf in sheep's clothing. Very politically astute and mealy-mouthed.
     
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  9. melamine

    melamine Senior Member

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    I googled the article referenced by a questioner at this presentation:
    http://www.prohealth.com/library/showarticle.cfm?libid=18864

    Komeroff is also now in the Ask the Doctor column business, providing stock descriptions of problems with Harvard-credentialed canned answers. As I recall, CFS was the subject of one. His column appears in the daily paper where I live. I agree with your assessment.
     
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It's occurred to me that perhaps the article is putting the blame excessively on the person who just repeated what she had read. I hope that Neil spoke to his sister before publishing it. Otherwise it could be upsetting and even damaging for her.

    He says "...your sister, whom you imagine after all these years, would know about ME..." But from whom? Has he told her?

    There are many different illnesses, and I have sometimes said something unintentionally stupid about some, due to not knowing the facts. I expect that many of us here have done the same, and maybe don't even realise it.

    Although I have experienced hurtful (ignorant) reactions and comments from friends and family, I wouldn't name them publicly like that.

    I agree with @worldbackwards that "'It's real, it's physical, it's ME!'" can look a bit desperate (but aren't we pretty desperate?). It also comes across as a bit irritating/naff to me, a bit too "Look at me!".

    But a calm-but-pithy statement to the effect that exertion worsens ME would be less so, I think. Pure fact - no gimmicks - to make people stop and think - like one of the shorter Confucian quotes.
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    I took that statement very differently to what you did and didnt at all take it that he was blaming his sister, was he really blaming his sister when he said that? or did you mistake his words?.

    The way I took that, he was pointing out that a lot of time has gone by but people dont still know about this illness.. To me that point was infering the general problem out there in which society itself hasnt been educated about this illness and of the false things being put out. I completely agree with what he said, things should of changed by now and we shouldnt have to be dealing with people (no matter who they are) not understanding (this doesnt mean the individual at all is at fault). Anyway, I dont think his post was at all about his sister was at fault but rather about the big black hole this whole thing is in.
     
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  12. worldbackwards

    worldbackwards A unique snowflake

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    It does seem rather unequivocal.
     
  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello Sidereal, yes you are correct unfortunately.

    Dr Komarrof does believe CBT and Exercise helps CFS patients, he said this on video recently with Deborah Waroff. He says he bases this on pro psychiatric papers from the UK he's read, and fully admits it on camera. He also believes GE and CBT 'works' because he sees it in his own patients :aghhh:. There are other videos in this interview, one is linked below where he talks about GE and CBT, there may be more in the other videos, but here is one.

    ME/CFS alert episode 61.

     
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  14. alex3619

    alex3619 Senior Member

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    That is my personal observation too. In a complex and difficult world, most cope by simply ignoring everything that is not important to them. So do we.
     
  15. alex3619

    alex3619 Senior Member

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    My experience is the reason the message often does not get through is that many people don't want to know.

    This is of course compounded by the massive problem with disinformation. If someone reads or hears that CBT/GET is great a hundred times, and that CBT/GET hurts us once, guess which idea they are likely to go with?
     
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  16. melamine

    melamine Senior Member

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    I don't doubt that Dr Komaroff has seen temporary recovery in some of his patients that he diagnosed as having CFS, and I can accept that he has seen full recovery in some he has diagnosed with CFS. My main question is, how soon after they became ill did he first see them? And did their CFS follow a severe infection or other identifiable event, what tests did he use to diagnose them, how long was his follow-up, what biological measures did he use...

    An uncle of mine described having a viral infection in his early 20s that sounded like mono, and being unable to work or do much of anything for several years after, but told me he felt he had completely recovered after that. (No GET or CBT in those days). Evidently with time and rest, some people recover and some do not. For those who follow their doctor's orders and get well, they may believe it is for whatever therapy they were prescribed. They also recovered with the aid of a doctor who told them they have a real illness instead of being burdened with the additional neuro-endocrine-immune stress of disbelief, abuse and neglect. That alone would greatly advantage those who have the potential to recover.

    Komaroff does not like tests "for routine use and clinical care for large numbers of patients" because... there is no treatment anyway, no good diagnostic criteria...insurance does not pay for investigational tests....
     
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  17. Min

    Min Guest

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    The MEA have a person with 'M.E.' undertaking a 900 mile walk to raise funds for them, starting on severe awareness day.

    'When will they ever learn' indeed.
     
  18. alex3619

    alex3619 Senior Member

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    I have commented on this elsewhere, I also think its a poor strategy. However I would like to add this person will be using a wheelchair some of the time, and have an extensive support team.
     
  19. Min

    Min Guest

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    One person with 'M.E.' is walking the entire 900 miles, the other is walking half - 450 miles.
     
  20. alex3619

    alex3619 Senior Member

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    Yes, and has a wheelchair.
     

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