A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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CMAJ (Canada) recommends exercise for CFS

Discussion in 'General ME/CFS News' started by Old Bones, May 3, 2016.

  1. Old Bones

    Old Bones Senior Member

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    I stumbled upon an article titled "A prescription for exercise" published on April 27, 2016 in the Kingston Whig-Standard: http://www.thewhig.com/2016/04/27/a-prescription-for-exercise

    It includes the following paragraph:

    "There is clear evidence that exercise intervention is effective for the following chronic conditions: osteoarthritis of the hip and knee, chronic non-specific low back pain, prevention of falls, heart failure, coronary heart disease, chronic obstructive pulmonary disease [COPD], chronic fatigue syndrome and type 2 diabetes."

    I will be sending the author (Tracie Smith-Beyak) an email to correct her incorrect perception regarding the suitability of exercise in ME/CFS. If others wish to do the same, she can be reached at: http://conquertraining.guru/#contact

    I tried to access the Canadian Medical Association Journal article to determine exactly what they said about exercise and chronic fatigue syndrome. However, one needs a subscription to access it. Does anyone out there have a subscription? If so, this is what you are looking for:

    • Tammy C. Hoffmann,
    • Chris G. Maher,
    • Tom Briffa,
    • Catherine Sherrington,
    • Kim Bennell,
    • Jennifer Alison,
    • Maria Fiatarone Singh,
    • and Paul P. Glasziou
    Prescribing exercise interventions for patients with chronic conditions
    CMAJ April 19, 2016 188:510-518; published ahead of print March 14, 2016, doi:10.1503/cmaj.150684
     
  2. deleder2k

    deleder2k Senior Member

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    http://www.cmaj.ca/content/early/2016/03/14/cmaj.150684

    Is this what you're looking for?


     
    Last edited: May 3, 2016
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    The quickie I sent to her biz email: http://conquertraining.guru/#contact

    Hello,

    Re http://www.thewhig.com/2016/04/27/a-prescription-for-exercise

    Your article contained information contraindicated for people living with myalgic encephalomyelitis (ME). Exercise is contraindicated for ME. ME patients are harmed by exercise:

    "pathological fatigue and malaise that is worse after exertion" http://www.ncbi.nlm.nih.gov/pubmed/26613325

    I look forward to your timely correction of this information to mitigate the harm of churnalism and misinformation.

    Sincerely,
    Scott Simpson

    (Chronic fatigue syndrome is an improper term...would you call someone with Parkinson's 'shaking body syndrome'?)
     
  4. yeah what tripe
    and my Mum had COPD...exercise, are they NUTS?! it would have literally killed her.
    maybe with some forms/stages hey anything's possible, but having seen her go through that awful illness which eventually killed her....exercise?! jebuz, WTH are these idiots smoking?!
     
  5. Old Bones

    Old Bones Senior Member

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    Here's the text of my email to Tracie Smith-Beyak:

    "I read, with dismay, your April 27, 2016 article “A prescription for exercise” published in the Kingston Whig-Standard. You included chronic fatigue syndrome as a condition for which exercise intervention is effective. Although well-intentioned, this advice is contraindicated for patients with ME/CFS, defined by the US National Institutes of Health as “an acquired, chronic multi-system disease characterized by systemic exertion intolerance”. In fact, the central characteristic of worsening symptoms and function after physical or cognitive activity is a primary feature that helps distinguish ME/CFS from other conditions. Subjective reports of Post Exertional Malaise (PEM) and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. http://www.ncbi.nlm.nih.gov/pubmed/24755065

    The “clear evidence” of exercise benefiting ME/CFS patients, as regularly regurgitated in the media, originates from the discredited U.K. PACE study.

    http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

    http://www.virology.ws/mecfs/

    In fact, 42 ME/CFS physicians, scientists and medical researchers are so strongly opposed to the PACE study’s recommendations regarding exercise and ME/CFS, they have sent a letter to the Lancet asking for an independent re-analysis of the individual-level trial data.

    http://www.virology.ws/2016/02/10/open-letter-lancet-again/

    The following editorial regarding the PACE study makes a valid point you would be wise to consider before next including a reference to ME/CFS in a published article:

    http://www.stats.org/editorial-on-pace/

    “Unless journalists start asking whether the studies they report on can actually answer the questions they claim to answer, science reporting will be little more than free PR.”

    To do otherwise is to potentially harm patients."
     
    Last edited: May 3, 2016
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  6. Old Bones

    Old Bones Senior Member

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  7. Old Bones

    Old Bones Senior Member

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    Curious. . . every single one of the above doctors whose report recommends exercise intervention for CFS is affiliated with an Australian university (Western Australia, Bond, Sydney, or Melbourne). To our Australian PR friends, I am so sorry you, too, are being adversely affected by the bogus results of the PACE study.
     
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  8. Justin30

    Justin30 Senior Member

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    I just sent them an email as well....

    Boy do we need our health authorities and government to lay waist to poor research and bring people up to date...
     
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  9. Justin30

    Justin30 Senior Member

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    Have you seen the proposed Doctor CBT amd GET VIDEO study out of UNSW? They want this to be produced and sent to all Drs....

    http://www.meaction.net/2016/04/29/tell-unsw-to-cancel-physician-training-in-get-and-cbt/
     
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  10. Deltrus

    Deltrus Senior Member

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    My doctor in Canada didn't even know what CFS was.

    All this "exercise recommendation" means is that:

    - People who don't have access to the internet will learn the hard way that they have to stay within their limits.

    - It means that the people in charge of this kind of stuff are not that great.

    - It means that funding may have been wasted. This is in the past already so it doesn't really matter.


    Personally I can stand small bouts of exercise and it benefits me. I'm young, male, and only have had CFS for a few years. My trigger was probably coxsackie b, not mono. All these things mean that I'm more likely to still be able to benefit from some exercise.

    I agree, "exercise for CFS" is retarded. It is common sense to exercise for any disease if you can tolerate it. If people can't tolerate exercise, then that is that. There is no need to do a study on it.

    Overall though, bringing awareness to CFS will bring 10x the results as fighting exercise, with the same energy expended. Nobody in Canada knows about CFS. My doctor doesn't know about it. Even less people actually understand it.

    We have so little energy that we need to stop protesting and start spending it more efficiently, in my opinion.

    For example just look at the media about the Zika virus, how little it effects the world compared to CFS, and how much funding it is now getting.
     
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  11. Justin30

    Justin30 Senior Member

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    This is highly bothersome to me....more people suffer from our disease.....

    Its all a matter of funding and it needs to be increased.

    Petitioning, protesting and getting the media involved and us a community is what will hopefully bring this life altering disease to the center stage.

    Dont forget to send shoes and sign petitions on MEAction as it all helps....

    Their is also Canadian petitions on their as well now....

    Most of us only have the internet to communicate....sooo...
     
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  12. panckage

    panckage Senior Member

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    Just going to throw this out there. As someone who has mild CFS I find exercise is very helpful in reducing/eliminating the effects of deconditioning. Whenever I thought that my condition had 'permanently worsened' it turned out the regular exercise eliminated this worsening. The improvement of deconditioning is incredibly slow and the exercise has to be paced. I do not not think my experience is out of line for those with mild CFS

    Of course if someone's cfs is more severe it is a completely different circumstance
     
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  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Back when I first got sick with ME the first two times, I was still (mostly) cycling to and fro work - about 20 - 25 mins each way - and getting PEM for my efforts...but only mild PEM symptoms - introspect, not cycling would have helped me recover faster.

    I wonder if ongoing exercise is impeding your healing? (Just thinking out loud)
     
    Last edited: May 5, 2016
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  14. *GG*

    *GG*

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    Did you have the 2 day CPET testing done? I was moderate, but still manage to exercise.

    GG
     
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  15. daisybell

    daisybell Senior Member

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    I've not been able to go for a run at all since I first got sick. A few attempts were not good - I have never replicated the 'high' I used to get from exercise. Now I only feel awful if I try anything significantly aerobic. I'm on my feet a fair bit over the day and probably do 3000 steps or so. More than that and I pay for it. If I 'potter' (which is my form of pacing) I am usually ok. Having said that, when in a relapse, I have to be much more careful. Moving around and using muscles carefully is not exercise in my book. The former is good for me, the latter is not!
     
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  16. *GG*

    *GG*

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    Yeah, I used to get a high from biking as well, nothing near that now! Just increased exhaustion and pain! What the hell is wrong with me?!

    I had a major crash in 2009, was out of work for about 3 months. Wasn't sure if I would ever work again, I didn't exercise for a year. I did major rest to recuperate!

    During that crash I changed lots, as I have said in the past, started LDN, gentle Yoga and meditation. Stopped drinking alcohol and caffeine. Got onto a better medicine for my sleep (Remeron), sleep machine and oxygen as well.

    GG
     
    Last edited: May 4, 2016
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  17. panckage

    panckage Senior Member

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    Nope. Stopping exercise leads to muscular deconditioning and worsening of symptoms. I've experimented with this a few times since joining this forum. For me exercise is of huge benefit (mind you ritalin is pretty much necessary for exercise, it doesn't really work without it)

    @*GG* I haven't had a CPET test done. If you are commenting because of my use of the "mild CFS" it's based on criteria posted by Hip. Basically someone who can maintain a part time job is considered mild by that criteria

    The 2 times I tried to run I had bad symptoms for a few days after. My exercise routine is less strenuous
     
  18. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    2016 - Canada recommends exercise for CFS

    2017 - Canadian CFS patients seek lawyers for compensation to seek damages for relapse in their disease due to non science based medical advice recommending they exercise, an avoidable phenomena due to current lack of medical knowledge over what conditions are currently contained within CFS.
     
  19. *GG*

    *GG*

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    Ah, not familiar with criteria posted by Hip. I went from working almost 40 hours a week to 30 hours a week. Did that over 5 years. I had the 2 day CPET testing and was found to be about 60% Normal for my age and sex(male), the word Moderate was used. Seems like you would be Moderate, which I think is worse than Mild, right?

    GG
     
  20. Valentijn

    Valentijn The Diabolic Logic

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    It would be very unusual for ME/CFS. Studies have shown no objective improvements from GET or CBT incorporating GET, even when featuring only mild and moderate patients.
     
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