CMAJ (Canada) recommends exercise for CFS

[Old Bones]

Here's the text of an email received from the writer of the article published in the Kingston Whig-Standard that brought the CMAJ report to my attention: http://www.thewhig.com/2016/04/27/a-prescription-for-exercise

"Column #309 on prescribing exercise intervention detailed the key points released in the April 19, 2016 edition of the Canadian Medical Association Journal [CMAJ]. The ten chronic conditions I mentioned in the column were taken directly from the review and the term 'Chronic fatigue syndrome' is listed as such in the review.
I am in no way suggesting that exercise is appropriate for all individuals suffering from the listed conditions but rather that they should ask their caregiver if exercise is appropriate for them. Graded Exercise Therapy [GET] in combination with psychological therapy is one of the most successfully evidenced treatments to date for Chronic Fatigue Syndrome. In addition, creating awareness and understanding around possible solutions is always a positive thing but again it must be considered on a case by case basis.
www.mayoclinic.org/diseases.../chronic-fatigue-syndrome/.../treatment/c...
I am incredibly sympathetic to anyone who is suffering from any of these conditions and that was my primary reason for sharing this review. Wishing you the best!"

Now, do I further attempt to educate her by letting her know the Mayo Clinic's view on our illness is woefully inaccurate? Probably not much point. But, at least I received a response.

 

[Justin30]

Here's the text of an email received from the writer of the article published in the Kingston Whig-Standard that brought the CMAJ report to my attention: http://www.thewhig.com/2016/04/27/a-prescription-for-exercise

"Column #309 on prescribing exercise intervention detailed the key points released in the April 19, 2016 edition of the Canadian Medical Association Journal [CMAJ]. The ten chronic conditions I mentioned in the column were taken directly from the review and the term 'Chronic fatigue syndrome' is listed as such in the review.
I am in no way suggesting that exercise is appropriate for all individuals suffering from the listed conditions but rather that they should ask their caregiver if exercise is appropriate for them. Graded Exercise Therapy [GET] in combination with psychological therapy is one of the most successfully evidenced treatments to date for Chronic Fatigue Syndrome. In addition, creating awareness and understanding around possible solutions is always a positive thing but again it must be considered on a case by case basis.
www.mayoclinic.org/diseases.../chronic-fatigue-syndrome/.../treatment/c...
I am incredibly sympathetic to anyone who is suffering from any of these conditions and that was my primary reason for sharing this review. Wishing you the best!"

Now, do I further attempt to educate her by letting her know the Mayo Clinic's view on our illness is woefully inaccurate? Probably not much point. But, at least I received a response.

You could say send her copies of the WHO ICD Code on ME. You could then ask her what the difference is between CFS and ME.

You could ask her be a Canadian Citizen what care givers and if she could find specialists that treat ME/CFS in Canada.

As far as I know there is only one clinic with "supposed specialist"

I really dont know what to say....so many sick in Canada and because I have ME on my file Dr will not even evaluate me in the hospital...

I have diagnosed POTS in Canada. So it adds something....I guess

 

[Old Bones]

You could say send her copies of the WHO ICD Code on ME. You could then ask her what the difference is between CFS and ME . . .

It seems to me that any person who takes the time to look for a website that disputes the position of a challenger, rather than reading the links provided (which appears to be the case in this situation), is a lost cause. No point bashing my head against a brick wall.

 

[Justin30]

It seems to me that any person who takes the time to look for a website that disputes the position of a challenger, rather than reading the links provided (which appears to be the case in this situation), is a lost cause. No point bashing my head against a brick wall.

Fair enough...

 

[meadowlark]

Here's the text of an email received from the writer of the article published in the Kingston Whig-Standard that brought the CMAJ report to my attention: http://www.thewhig.com/2016/04/27/a-prescription-for-exercise

"Column #309 on prescribing exercise intervention detailed the key points released in the April 19, 2016 edition of the Canadian Medical Association Journal [CMAJ]. The ten chronic conditions I mentioned in the column were taken directly from the review and the term 'Chronic fatigue syndrome' is listed as such in the review.
I am in no way suggesting that exercise is appropriate for all individuals suffering from the listed conditions but rather that they should ask their caregiver if exercise is appropriate for them. Graded Exercise Therapy [GET] in combination with psychological therapy is one of the most successfully evidenced treatments to date for Chronic Fatigue Syndrome. In addition, creating awareness and understanding around possible solutions is always a positive thing but again it must be considered on a case by case basis.
www.mayoclinic.org/diseases.../chronic-fatigue-syndrome/.../treatment/c...
I am incredibly sympathetic to anyone who is suffering from any of these conditions and that was my primary reason for sharing this review. Wishing you the best!"

Now, do I further attempt to educate her by letting her know the Mayo Clinic's view on our illness is woefully inaccurate? Probably not much point. But, at least I received a response.

I wrote to her as well, and got the same letter. Galling. If she had bothered to look at the links
I sent--and that I know you also used, Old Bones, and Scott as well--she wouldn't try to 'splain effective treatment to patients who know more about it than she does.

I'm mulling over writing something along the lines of "thanks for your letter ... I think you will find, as time goes on, that the Mayo Clinic is behind the curve on this issue (as the links I sent you illustrate). But I do appreciate the reply" and just leave it at that. You can lead a horse to water but you can't make it drink.

I'm still wracking my brains for a way your letter could be put on the website, Old Bones, without destroying your anonymity. It's SUCH a great response. But I am extremely private myself, so I sympathize.

 

[Justin30]

I got the same response as well

 

[Valentijn]

Ask who you should contact further up her management chain? Since she's apparently indifferent, and/or illiterate.

 

[Old Bones]

I actually didn't expect to hear from the CMAJ regarding my email. Here's the text of an email received this morning:

"The CMAJ editors have asked that you please post your letter to the editor on our eletters system. We have provided the link to our article, where your letter should be linked. Once your letter is posted with the original article, the editors will review it for publication."

The problem is, in doing so, I would lose my on-line anonymity. . . .

Here's a link to the earlier post with the content of my CMAJ email:

http://forums.phoenixrising.me/inde...nds-exercise-for-cfs.44396/page-3#post-722463

@ScottTriGuy kindly offered to submit my email under his name to protect my on-line anonymity. Scott added a few words of his own, to strengthen the message. We're pleased to report it has now been published on the CMAJ website. Here are the details, received in an email to Scott:

"Your eLetter to the Editor has been published on The Journal's web site:http://www.cmaj.ca/. You may view it by clicking on the "eLetters" link on the home page and then clicking on "Read recently published Letters". Scroll down to see your letter. Alternatively, you may go to the 'Full Text' of the article to which you referred in your letter and click on "View Responses" in the right panel.

Your Letter: "Promoting contraindicated treatments for ME patients"
Letter URL: http://www.cmaj.ca/cgi/eletters/188/7/510#731902

Your eLetter has provided a forum for readers and authors to have an ongoing dialogue about the ultimate impact of this information. The Journal is most appreciative of your effort.

Note: It can take up to one hour for the eletter to appear on the website after it has been published.

Sincerely,

Editor CMAJ"

No responses, yet. However, perhaps we could create some "buzz" around the article by sending supportive comments. Any takers?

 

[Old Bones]

A second letter discrediting the article "Prescribing exercise intervention for patients with chronic conditions", also written by an ME patient, has now been published on the Canadian Medical Association Journal (CMAJ) website. It can be viewed here: http://www.cmaj.ca/cgi/eletters/188/7/510#731902

So far, nothing from those who actually "count" in the Canadian medical system (meaning doctors, unfortunately, as usual).

 

[Justin30]

A second letter discrediting the article "Prescribing exercise intervention for patients with chronic conditions", also written by an ME patient, has now been published on the Canadian Medical Association Journal (CMAJ) website. It can be viewed here: http://www.cmaj.ca/cgi/eletters/188/7/510#731902

So far, nothing from those who actually "count" in the Canadian medical system (meaning doctors, unfortunately, as usual).

They are muzzled by government and a lack of grade A Studies.....they supposedly risk their license if they express there opinion or view...which is a load of crap in my eyes...

Is there a way we can get MEAction to help...possibley a letter

What about letter from American Scientists....

Just brain storming

 

[ScottTriGuy]

I posted a link to the CMAJ on a FB ME group and 2 of the folks submitted responses - not sure why the other didn't get published, it was very well written.

 

[ScottTriGuy]

@Old Bones A response!

http://www.cmaj.ca/content/188/7/510/reply#cmaj_el_731958

• Tammy Hoffmann, Professor
• Paul Glasziou, Chris Maher, Tom Briffa, Catherine Sherrington, Kim Bennell, Jennifer Alison, Maria Fiatarone Singh

Bond University

We write in response to letters by Simpson and Boutilier.

We based the recommendations on the Cochrane systematic review which looked at 8 randomised trials of exercise for chronic fatigue, and together showed a consistent modest benefit of exercise across the different patient groups included. The clear and consistent benefit suggests indication rather than contraindication of exercise.

However, like most interventions, exercise should not be a 'one size fits all' and in Appendix 5 of the article (and the references mentioned), important considerations are mentioned such as individual tailoring, gradual increases and communication between exercise providers and individuals.

The PACE trial was used as an illustration of one possible exercise intervention. Other trials have tested different exercise interventions and we acknowledge that further research is required to identify which type of exercise intervention is most beneficial, as well as details such as intensity and length of the intervention.

 

[Justin30]

This is a load of crap response.....

In Canada their is not one center for how to excercise, expert physios, etc.

CPETs prove damage to the Anerobic system.
Dyauonomia a cardinal feature in many peoples CFS that needs to be controled through the use of medications muddys the waters because a safe heart rate can be difficult to find.

You dont just treat people with Cancer or MS with Exercise and talking.

This is a cheap excuse for the Canadian Government to fool the masses.

There was an idea to create a TV Commercial and other media Campaigns similar to MS.....I think its time to start spending some money to get this in the public eye....

 

[Mij]

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

You should view Mark VanNess's video regarding a marathon runner who was able to continue running, when she went back to do the 2 day CPET testing she found out she was actually worse six months later.

Just because you are actually able to perform the exercises it doesn't mean it's good for you long term. I don't mean "you" in particular,

 

[Jeckylberry]

They don't seem to understand, judging by the mild mannered response in their letter, just how much of an impact GET is having on us. They probably had never heard of it and don't know anything about it. They just mentioned it as an example. This is penned by an honours student, possibly as part of a PhD or else just all authors filling up the dossier with publications as one is expected to and at the same time bolstering up a good student. When I was studying we were told that the first name is the primary author, the others helped, and the last name is the supervisor, all get to add this to their portfolio).

From a read of the CFS part of the review, which is very brief, it doesn't appear to be very deeply researched. It only cites a single reference that itself is a review.

Larun L, Brurberg K, Odgaard-Jensen J, et al. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev 2015;(2):CD003200.

It admits that evidence is not strong.

"The most effective type, duration and intensity of exercise for chronic fatigue syndrome are unclear. Appendix 5 describes an example of one exercise intervention (graded exercise therapy)."

From what I gather the purpose of the paper is not to review the actual therapy (they are reporting on what is shown to work) but to report that it exists and has had some success as a treatment but that it is under-utilised due to lack of awareness. It is focussed on demonstrating that exercise programs do exist but are poorly implemented and that these treatments are not taught to doctors and so can become distorted and ineffective.

In the appendix 5 they reference the PACE trial and if what they included in that is all they read up on then, to the uninitiated, it looks feasible. Their biggest mistake, I think, is to take their reference as gospel and only look in that source for contraindications.

 

[Bob]

I'm not sure if this has been posted in this thread. It's the details of the published research paper. I'm just posting the details here for reference...

Hoffmann TC, Maher CG, Briffa T, Sherrington C, Bennell K, Alison J, Singh MF, Glasziou PP.
Prescribing exercise interventions for patients with chronic conditions.
CMAJ 2016;188:510-8
http://www.cmaj.ca/content/188/7/510.full
http://www.ncbi.nlm.nih.gov/pubmed/26976965

Full text (pre-publication version):
http://www.cmaj.ca/content/early/2016/03/14/cmaj.150684

Letters:
http://www.cmaj.ca/content/188/7/510/reply#cmaj_el_731958

 

[perrier]

I feel this is where the disease needs to be defined in subgroups, stages or completely different diseases.

I am sick of us all being patient Drs.....I want us to be treated in a humane way and studied biologically.....

In 1 year MS research releases as many studies as we have had in the History of ME... ME was defined within years of MS...yet was not granted any treatments, solutions or maney yet impacts 3 x or more the amount of people...

Enough with the BS....CBT and GET Garbage....it ends in permanent deterioration in 95% of ME patients based on what I have read.....and in my experience

I was mild and became severe because I just did normal day to day things....one walk that was too long....well no s**** my aerobic system is messed up!

Real ME needs reel biological research....not the promotion of CBT or GET in anyway....PERIOD!

People lose their whole lives to this illness money, children, spouses and more....

There are likely over a million people locked away in dark rooms, unable to tolerate noise and sound, and whatever else....

You go tell a cancer patient to go search all over the internet looking for what tests they shoud have.....you go tell that cancer patient to try every medication and supplement know to man....you go tell that Cancer patient to Talk and Walk away his Tumor that is eating his body.....its a joke....WHY DO WE HAVE TO BE TREATED AS SO!

This is an absolute joke that we as members of a modern society are subjected to such crap....

Real ME is a Neuro Immune illness with devistating outcomes and leads to more comobidities then I can count on with my fingers and toes....

When Klimas said she would rather have HIV and that ME patients can be compared to those dieing of late stage AIDS.....

Do you think she was kidding??????

Do you wonder why so many go missing from this forum after 2, 3 , 4, 5 years......they either recover, get worse, get banned, lose their internet, or leave for unknown reasons....I have seen final posts from many that seem so sick....

Did you hear the about the young personal trainer that is now as severe as Whitney Dafoe....his name is Jamison...5 years is all it took

What about the countless books, documentaries, photos, youtube videos, etc. of suffering ME patients.....

I had Chronic Fatigue when I was tired from working to hard or lifting weights or whatever I was doing too much....this does not mean I had chronic fatigue syndrome...stress can make your sleep poor...so can a bad diet...so can an allergy....

ME shares similarities to CFS....personally I feel as though and many others do too that exercise in a person with ME makes them decline or deteriorate....

Not to mention I have heard from my Drs that people are fine then one day they just drop....Bedridden....cant get out of bed....its happened to many on this forum....almost like relapsing remitting MS....

The bottom line is that its BS exercise therapy that is pushed on us....when their is a downright biological hidden problem.....the Institute of Medicine Report says overexertion makes people worse.....

I am sick of the exercise, pace yourself crap, when their is a real biological illness at hand....

Do the research and stop the Harm!!!!!

Bravo bravo

 

[perrier]

Here's the text of an email received from the writer of the article published in the Kingston Whig-Standard that brought the CMAJ report to my attention: http://www.thewhig.com/2016/04/27/a-prescription-for-exercise

"Column #309 on prescribing exercise intervention detailed the key points released in the April 19, 2016 edition of the Canadian Medical Association Journal [CMAJ]. The ten chronic conditions I mentioned in the column were taken directly from the review and the term 'Chronic fatigue syndrome' is listed as such in the review.
I am in no way suggesting that exercise is appropriate for all individuals suffering from the listed conditions but rather that they should ask their caregiver if exercise is appropriate for them. Graded Exercise Therapy [GET] in combination with psychological therapy is one of the most successfully evidenced treatments to date for Chronic Fatigue Syndrome. In addition, creating awareness and understanding around possible solutions is always a positive thing but again it must be considered on a case by case basis.
www.mayoclinic.org/diseases.../chronic-fatigue-syndrome/.../treatment/c...
I am incredibly sympathetic to anyone who is suffering from any of these conditions and that was my primary reason for sharing this review. Wishing you the best!"

Now, do I further attempt to educate her by letting her know the Mayo Clinic's view on our illness is woefully inaccurate? Probably not much point. But, at least I received a response.

What a pathetic bunch of sod.

 

[Jeckylberry]

It smacks of portfolio stuffer. This is not a hard nosed bank rolled offensive against ME research. However a good direction to take would be, as you have done, letting them know it's not that simple. Encouraging them and others in the up and coming research science community to distrust the PACE trial and to avoid references to it and to suggest opposing views and better exercise protocols outlined in documented respected papers and reviews will be good for their education.