Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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New article in CBC - Exercise Helps!!

Discussion in 'General ME/CFS News' started by boomer3, Feb 18, 2011.

  1. boomer3

    boomer3

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  2. leela

    leela Slow But Hopeful

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    Ack!! My mother, who usually remains completely uninvolved in understanding/researching/being curious about ME/CFS, just sent me this today! :Retro mad:
     
  3. alex3619

    alex3619 Senior Member

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    Hi, There is a media blackout on this, this is the comment section now:

    This story is closed to commenting.
     
  4. Scarlett

    Scarlett

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    This is just unbelievable.
     
  5. meandthecat

    meandthecat Senior Member

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    The BBC carries the same story http://www.bbc.co.uk/news/health-12493009
    I feel embarrassed to be British with the medical establishment trotting out the same old chestnuts. It feels as if the whole place has given up on critical thinking, content to pass the buck until it returns to the patient. When you see a GP here they sit there and then ask you what you want them to do! Not only are we responsible for our illness but also for curing it! Presumably the next stage is to do away with doctors altogether and leave us to rot. Oh sorry, that's what happens now.

    I have fought back over 5 yrs and inspite of useless medical advice have found a way back; and yes I used exercise, and diet and sleep and meds; anything that helped and it would have been so much better with support, psychological support even. But I did this; My Way,( LoL) by believing my own perceptions, not being convinced that I had 'False illness beliefs'; by following the process wherever it led and using intuition to guide me, not by dictat from some Physiotherapist who swims in the shallow end of the pool.

    Our Doctors have the most training of any professional group, are highly intelligent and well qualified, so why do they behave like retards! Discuss.
     
  6. SaveMe

    SaveMe

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    "Chronic fatigue may be reversed with exercise"

    Are they fu$$in serious? This is an organic illness with a physical cause. I continue to ask "Why the cover-up?
    Tell an AIDS patient that they will be cured through exercise. This is not that far off people.
     
  7. LaurelW

    LaurelW Senior Member

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    This has put me in a really bad mood!:Retro mad::Retro mad::Retro mad: When are we going to get out of the stone age?
     
  8. boomer3

    boomer3

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    I have never seen the CBC black out the comments on an issue that would not compromise the privacy of someone. I have never seen a story that was open to comments shut down. That is because too many people were giving the real scientific story that should be associated with cfs. There is a continual blocking of postings related to cfs or xmrv very recently. They only want one story out and it is on the front web page.
     
  9. Nielk

    Nielk

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    I feel the same LaureW.
    It seems that thus whole week has been an attack on us from so many sides.
    We thought we progressed with the discovery of XMRV and now it feels like we are going back to the beginning when
    no one understood us.
    It's like there's been a warp in time and we are back in the 1970's.

    Nielk:sad::sad::sad:
     
  10. eric_s

    eric_s Senior Member

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  11. sacha

    sacha

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    A leading Dutch newspaper brought the story without even interviewing a patient organisation, just as if it were the Revealed Truth. We're having a very hard time with the media in Belgium and the Netherlands. Only last week an article critiqueing the psych approach was removed from the site of another newspaper. It had only been on for a few hours and inside sources say the paper gave in to 'heavy pressure'. I'm very disgusted.
     
  12. Nielk

    Nielk

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    You are right eric-s.
    The best defense is offense.

    To counteract all their absurd "research" trials, we need to counter with real biological and physical studies.
    We need to promote and support these real efforts by any means we can.
    Whether it's research in Europe or the WPI in the States - THEY NEED OUR MONEY AND SUPPORT.
    We are not just going to sleep and cry this away. We need to fight stronger!!!:victory:
     
  13. Chakra5

    Chakra5

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    It is so dis-hearting. This. is the worst kind of "good" news because it plays so well to the disconnect with reality we struggle against so often and in so many ways.

    It really offers little that is new (although some might actually learn a little from it, so who knows), and it pushes the us right into the black hole of disbelief so many people hold toward the illness. From a lack of experience, to an inability to be able to imagine what it is actually like, to already holding a good deal of skepticism...thinking that we all aren't really sick, rather just trying to get over on the system somehow,

    There actually is a pair of nuggets of "good" news here. But neither are really surprising frankly.

    First, people really struggling with catastrophic circumstances can benefit from support, psychotherapeutic or otherwise. Pardon my language, but no shit!? Of course what many are reading is that it really IS all in our heads even if that this is not what the study says. Even the media is missing the actual point and how mundane it is. Give me a therapist who can help me talk about how incredibly difficult this all is and how I might manage my life better and find ways to view the world in a livable and positive light, and I say bring it on....but for god's sake, don't make that out to be some kinda cure! In fact you need to shout from the rooftops that it simply "helps" a bit!...at best!

    Second, it tells us that more activity is better than less, as long as we don't over do it, and that gradually increasing activity can help us be more active. Need I respond again? Now the bit about gradual increase vs staying within limits does raise my awareness a bit...but my experience is that this is indeed true and what I am always trying to do, work a little more this time, each time out...the problem is that I am also constantly smacking my face into a limit and having to fall back for a while, then start over. Hey I'm resigned to it and that it's what it is, but again...if someone wants to call that a "cure", they're cracked.

    and a more important point is that neither of those "insights" say much at all that should be misunderstood to paint us as malingerers...but damnit, it's EXACTly how it reads and is being read.

    So actually this is not useless info, but it's damn near as far as I'm concerned if nothing else, because I already know both of the outcomes and try to incorporate them. But meanwhile, it just gives more grist for those who willfully or through lack of ability to imagine or empathize past their own experience, end up believing we are worthy of dismissal.

    So bad job
     
  14. Scarlett

    Scarlett

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    Definitely. We need the backing of PR and marketing people who have access to the right media.
     
  15. eric_s

    eric_s Senior Member

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    Just donated 10 Euros to IrsiCaixa, 10 to ESME and 10$ to the WPI. More to follow. Everybody who can, please do the same. There's a wide variety of choices, for every taste, we don't have to agree on "the best" recipient for a donation.

    We can make their time run out.
     
  16. meadowlark

    meadowlark Senior Member

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    I tried to send this to the CBC website, asking why they closed their piece to comment. Unfortunately, I keep getting bounced back, supposedly because I haven't filled out all the necessary fields--which I have. Maybe the e-mail is too long. Monday is a statutory holiday here, but I'm calling the CBC on Tuesday and asking who I should e-mail this to. If that fails, a friend's husband works on their website and may sneak me the direct e-mail address, so I can get there but avoid the mechanism built into the site itself.

    FYI, here's the text I will be sending:


    "I have no idea why the CBC's websites piece on the supposed benefits of graded exercise therapy for CFS patients was closed to comments. (I refer to http://www.cbc.ca/health/story/2011/02/18/chronic-fatigue-exercise-behaviour-therapy.html.) Other pieces based on the study in Lancet have appeared in the L.A. Times and the New York Times, have been open to comments, and received many that were extremely well informed. Why is the CBC afraid of this? Why do I pay taxes to keep the CBC in business if it shies away from discussion of evolving science into an illness that affects 7 million people worldwide and NUMBER TK Canadians?

    Because I have Chronic Fatigue Syndrome, it is hard for me to write at length. Therefore, I am copying here, with minor adjustments, my published comment on the New York Times piece:

    "Chronic Fatigue Syndrome, more correctly called Myalgic Encephalomyelitis or ME/CFS, is not "chronic fatigue," as in "always tired." As comment #20 brilliantly observes, you might as well call Alzheimers "Chronic Forgetfulness Syndrome."

    In fact, the World Health Organization defines Chronic Fatigue as a neurological illness for a reason. In addition, the Canadian Consensus Criteria, considered by most researchers around the world as the gold standard for diagnosing ME/CFS, puts ME/CFS in the "NeuroEndocrineImmune" category, meaning it attacks all three systems. Among the symptoms: orthostatic intolerance (meaning you can't stand up for long, because your blood pressure plunges and your heartbeat soars), post-extertional malaise (at its most severe, after walking half a block you are too tired to hold a pencil--and for some, even holding the pencil makes them too tired to turn their head on a pillow), swollen glands, constant fever, vertigo and visual disturbances, fibromyalgia, chemical sensitivities causing nausea, migraine and severe headaches, muscle pain and weakness, spatial instability and disorientation, and adrenal dysfunction. And of course, a damaged immune system means you are vulnerable to almost any bug out there, as well as malignant conditions like cancer. On average, ME/CFS patients die twenty years earlier than healthy people.

    The British researchers have reached their bizarre conclusions because, in order to support the UK's long-entrenched belief that ME/CFS is psychomatic, they actually disallowed any of the above symptoms from the patients in their study. Applying their results to the reality of millions of ME/CFS sufferers around the world is absurd, and Tuller's article should have noted that oranges are being compared to apples.
    .
    In 2009, ME/CFS specialist Nancy Klimas, whose practice was once busy with HIV, told the New York Times i that "My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

    Indeed, since 2009, two ironclad studies involving (collectively) the Cleveland Clinic, National Cancer Institute, National Institute of Health, Food and Drug Administration and the trailblazing Whittemore-Peterson Institute have found a retrovirus (XMRV) and its family present in the blood in the overwhelming majority of ME/CFS patients. Retroviruses write themselves into your DNA and are incurable. There are only three known human retroviruses (HIV is the best known)."

    CBC: Here are my questions. The Canadian diagnostic criteria for ME/CFS is based on a long list of symptoms caused by damage to the patient's neurological, immune and endocrine systems. The Brits, on the other hand, chose the patients for this study by telephoning citizens and asking if they had felt tired for more than six months.

    So I ask you: What relevance does this study have to Canadians? Why do you not have a science reporter qualified to see this study in the context of Canadians, who are diagnosed (by the few Canadian doctors who are versed in our illness) according to the critiera developed by our own Ministry of Health? Would you publish the results of a cancer study from abroad that defined cancer as an impacted wisdom tooth as though its advice applied to Canadians struggling with the illness? And if you did, would you be surprised that the piece provoked spirited discussion?

    I would appreciate an answer. (Again, my central questions: Why did you consider this study relevant to Canadians, when Canada defines ME/CFS so differently than the UK? And why was the article closed to comments?

    Yours truly,


    - - - - -
    I doubt if this will make any difference, but at least it relieved my anxiety a bit.

    I find these negative pieces, appearing absolutely everywhere, to be deeply stressful. I am 90% bedbound, and every time one of these pieces is published, it's like the coffin of my life becomes smaller and darker. Well, let me switch metaphors. It's like yet another heavy stone has been laid on my heart, and I feel both physically and emotionally crushed. I have been working hard on accepting my illness, changing my approach to life and my values .... but the cruelty of these ignorant pieces is really beyond my coping skills. I suppose I could choose to ignore them, but I feel that we must fight back, and want to play my part in that. Every little gesture that way helps my dignity. I don't want to give that up -- and so I read the pieces.

    How do people cope with this constant onslaught?
     
  17. eric_s

    eric_s Senior Member

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    It is stressful. But we have to try to not let it get us down. We have to fight back and make progress. Every little bit of progress will make things look better. There's much everyone of us can do.

    If you can, donate, even if it's only 5 or 10$. Join an organisation, if you can't afford a membership fee, i think there are orgs where membership is for free. Try to get other PWCs you know and healthy family members and friends to donate and to join and support organisations. Sign petitions, write emails, faxes, letters, send MCWPAs press releases to media etc. Help in free efforts to raise money like the video contest last year or others, there are links here on Phoenix Rising.

    We are so many, there is no way we can't get to where we want to get, if we get organised and take action.
     
  18. eric_s

    eric_s Senior Member

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    And don't forget, in around 4 months or so there should be results of the BWG phase III. If those confirm XMRV in ME/CFS CBT/GET is dead.

    But i think no matter what will happen we should use the time until then to get organized better and raise all the money we can. Because even if XMRV is confirmed, we will probably have some way to go until there is a good treatment.
     
  19. alex3619

    alex3619 Senior Member

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    Hi meadowlark, post 16, most newspapers have a strong character (not just word) limit on what you can send them. This alone could block you. You might break it up, send it as part one, part two, part three. Good letter by the way. Bye, Alex
     
  20. Carrigon

    Carrigon Senior Member

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    I don't understand how this can be allowed to keep going on and on all these years. And no matter how much physical evidence there is that we are physically ill, they just keep ignoring it and pushing things to make us worse. I've seen first hand what exercise does to those who have this severe. I've seen people pushed into comas, permanent bedbound, and in my own case, I ended up bedridden for two years. Exercise is the worst thing you can do to a severely ill CFS/ME patient.
     

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