• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CMAJ (Canada) recommends exercise for CFS

u&iraok

Senior Member
Messages
427
Location
U.S.
We dont need exercise....we dont need CBT...

WE NEED RESEARCH, TREATMENT AND COMPOTENT PHYSICIANS.

Anyone have any idea just why so many people keep pushing exercise on us?

This is why things are so muddled and confusion is made between ME and CFS:

The Ramsay Definition for Myalgic Encephalomyelitis
(1986)

“A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

(1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

(2) Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

(4) A characteristically chronic relapsing course."

From "Myalgic Encephalomyelitis - Then and Now. An Epidemiological Introduction" (Chapter 7 in Clinical and Scientific Basis of M.E./CFS):

"Nomenclature

"The illness, though similar to non-paralytic poliomyelitis in many clinical aspect, could clearly be distinguished and was diagnosed as Benign Myalgic Encephalomyelitis. This name gives a clearer clinical description than many of the eponyms used previously (Iceland Disease, Akureyri's Disease, Epidemic Neuromyasthenia) or invented subsequently (Post viral syndrome, Chronic Fatigue Immune Dysfunction Syndrome). These share the common disadvantage of obscuring the world-wide incidence or of trivializing the clinical severity of the illness."

Dr. Ramsay, together with Dr. Dowsett, listed this criteria for M.E. in 1990 in the same article (just prior to his death):

"We adopted the following criteria:

"A syndrome initiated by a viral infection commonly described as a respiratory/gastro intestinal illness but a gradual or more dramatic onset following neurological, cardiac or endocrine disability is recognised.

"The cardinal features, in a patient who has previously been physically and mentally fit, with a good work record are:

(1)Generalised or localised muscle fatigue after minimal exertion with prolongedrecovery time.

(2)Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.

(3)Variable involvement of cardiac and other bodily systems.

(4)An extended relapsing course with a tendency to chronicity.

(5)Marked variability of symptoms both within and between episodes."

I've never seen this definition. It's a good one.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
Personally, I find mild exercise beneficial (and enjoyable) during a remission, but harmful during a relapse.

My relapses and remissions typically last 1-4 years each and I've been through 9 of these cycles in my lifetime. So, for me personally, I have some confidence in this changing definition of exercise.

Right now I'm roughly 2 years into a bad relapse, and dream (literally) of not being housebound and once again doing some mildly active things.

This is interesting that some people have this relapse/remission cycle where you can go from exercising during remission to being housebound during relapse. I've never had that, just sometimes a few weeks where I feel a little better, a few weeks where I feel worse.

I wonder how many people have this vs a more steady state.
 

Old Bones

Senior Member
Messages
808
I'm in the process of drafting an email to the Canadian Medical Association Journal (CMAJ) regarding the report "Prescribing exercise interventions for patients with chronic conditions". @deleder2k kindly provided the following link:
http://www.cmaj.ca/content/early/2016/03/14/cmaj.150684

Since the authors of the report are all affiliated with Australian universities, perhaps one of Phoenix Rising's Australian members would be willing to send an email to the contact person provided in the report.

Correspondence to: thoffman@bond.edu.au (Bond University, Gold Coast, Queensland, Australia)
 

u&iraok

Senior Member
Messages
427
Location
U.S.
The bottom line is Ramasay and others have had this pinned for decades....

I read an article in 1992 about CFS that I recently re-read and it was spot on, a really good article. I understand your frustration about why research and understanding has barely gone anywhere since 1992. Really, why is that? There has to be a reason.
 

Old Bones

Senior Member
Messages
808
Here's my email to the CMAJ (main contact and ombudsman), copy to Dr. Jane Philpott, Canadian Minister of Health.

"The mission statement of the CMAJ includes the intent to “promote the health and well-being of the Canadian public.” By publishing the article “Prescribing exercise interventions for patients with chronic conditions”, you failed to do so with respect to one patient group – those with the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). You further failed to meet four of eight CMAJ goals and objectives as follows:
  1. To provide accurate and up-to-date scientific and clinical information . . .
  2. To provide balanced insight and analysis, with a Canadian perspective . . .
  3. To maintain the highest standards of editorial integrity independent of any special interest.
  4. To keep readers abreast of trends and events that affect health and the delivery of health care in Canada and abroad.
The above-referenced article included chronic fatigue syndrome as a condition for which exercise intervention is effective. 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 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 authors of the article in question are all from Australia. Where’s the Canadian perspective? Regardless, by publishing inaccurate scientific and clinical information with respect to ME/CFS, you missed the opportunity to highlight several documents published domestically. For example:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Canadian Consensus Document (CCC) http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

This is among the most-respected ME/CFS criteria documents in the world – so much so that it is being used to select patients for the US National Institutes of Health NIH Intramural Study on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. http://mecfs.ctss.nih.gov/faq.html

The CCC states, on page four of the overview:

Post-Exertional Malaise and/or Fatigue: Physical or mental exertion often causes debilitating malaise and/or fatigue, generalized pain, deterioration of cognitive functions, and worsening of other symptoms that may occur immediately after activity or be delayed. Patients experience rapid muscle fatigue and lack endurance. These symptoms are suggestive of a pathophysiology which involves immune system activation, channelopathy with oxidative stress and nitric oxide related toxicity, and/or orthostatic intolerance. Recovery time is inordinately long, usually a day or longer, and exercise may trigger a relapse.”

From the accompanying table, documented dysfunctional reactions to exercise experienced by ME/CFS patients include: “elevated resting heart rate, reduced heart rate at maximum workload, sub-optimal cardiac output, decreased cerebral blood flow, decreased cerebral oxygen, decreased body temperature, breathing irregularities, and impaired oxygen delivery to the muscles”. Based on these impacts, how can exercise be deemed an appropriate intervention for ME/CFS patients?

Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians (Alison C. Bested and Lynn M. Marshall) http://www.degruyter.com/view/j/reveh.2015.30.issue-4/reveh-2015-0026/reveh-2015-0026.xml

This review, from one of Canada’s leading ME/CFS specialists, states the following:

Graded exercise therapy: The Oxford criteria for chronic fatigue syndrome were used to assess graded exercise therapy (GET) and also for the Cochrane analysis. The Oxford CFS criteria do not exclude patients with psychiatric disorders: depressive illness, anxiety disorders and hyper-ventilation syndrome. It is known that depressed patients improve with activity. ME/CFS is a physical illness with post-exertional malaise. As a result of including patients with depression in the Oxford studies, the studies erroneously concluded that CFS patients improve with GET. . . Therefore GET is contraindicated and can be harmful for patients with ME/CFS using the CCC criteria.”

IDENTIFICATION AND SYMPTOM MANAGEMENT OF MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME -- Summary of the Clinical Practice Guideline – January 2016
http://www.topalbertadoctors.org/download/1929/MECFS CPG.pdf?_20160414151652

In Alberta, clinicians who take the time to study the above document (as opposed to reading the recent CMAJ article) will have accurate information and the tools necessary to appropriately diagnose and treat ME/CFS patients. With respect to exercise, this clinical practice guideline states the following on pages 12 and 13:

“COGNITIVE BEHAVIOUR THERAPY AND GRADED EXERCISE THERAPIES

In ME/CFS, both cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have been rigorously studied using randomized control trial (RCT) analysis). . . . However on closer analysis of the literature, there are several areas of concern. . . . There is now an extensive literature showing that many of the assumptions underlying the use of CBT and GET in ME/CFS are incorrect for some or even most patients with ME/CFS. . . . . high rather than low activity level is a risk factor for ME/CFS.

. . . although the authors of a recent meta-analysis conclude that there is "no evidence suggesting that exercise therapy may worsen" outcomes, data not included in this systematic review suggest otherwise. Although harms are not well reported in the RCTs, one trial reports patients receiving GET reported more adverse events compared with those receiving. . .adaptive pacing, or usual care; . . . A growing literature shows that some patients with ME/CFS are unique from individuals with other conditions in that they are not able to replicate a maximal exercise test two days in a row despite objectively measurable maximal effort. Patients with other, serious medical conditions, even end stage heart disease and COPD are able to replicate their effort even if it is subnormal. The two-day cardio pulmonary exercise test (CPET) protocol may be a way to measure post exertional malaise though the side effects of the test are considerable and less rigorous tests are being sought. . . . These data suggest that increased activity has measurable physiological consequences and should be undertaken with caution in ME/CFS. In summary, all patients with ME/CFS have post exertional malaise (PEM) which limits the ability to exercise."


The “clear evidence” of exercise benefiting ME/CFS patients, as regularly regurgitated in medical journals and the media, originates from the discredited U.K. PACE study.
http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

In fact, 42 ME/CFS physicians, scientists and medical researchers are so strongly opposed to the PACE study’s recommendations regarding exercise for ME/CFS patients, they have sent a letter to the Lancet asking for an independent re-analysis of the individual-level trial data. In the opinion of these esteemed experts, “such flaws have no place in published research”.
http://www.virology.ws/2016/02/10/open-letter-lancet-again/

In closing, the article published in your journal is neither accurate, nor up-to-date. According to your website, “CMAJ has had substantial impact on health care and the practice of medicine in Canada and around the world.” You have done a grave disservice to ME/CFS patients by recommending a medical intervention that is harmful. I respectfully request that you correct this egregious mistake by publishing a retraction, together with articles that provide physicians with safe and appropriate options for diagnosing and treating this vulnerable and under-served patient population."
 

Old Bones

Senior Member
Messages
808
I actually didn't expect to hear from the CMAJ regarding my email. So, the fact that I did is encouraging. 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, http://www.cmaj.ca/letters/submit/cmaj;cmaj.150684v1,

where your letter should be linked. Once your letter is posted with the original article, the editors will review it for publication.

Kind regards,

Executive Assistant, CMAJ 1867 Alta Vista Drive Ottawa, Ontario KlG 5W8 1-866-971-9171ext. 2295/613-520-7116 ext. 2295 Fax: (613) 565-5471 "

The problem is, in doing so, I would lose my on-line anonymity. It's still possible to "Google" my name and get no "hits" that apply to me -- a degree of privacy I have consciously tried to achieve. I signed the email with my real name to give it credibility, but with the expectation it wouldn't be posted on the open internet. So, unless the CMAJ ombudsman takes this on, it seems my efforts will have been for nothing.

Edited to respect the on-line privacy of the CMAJ Executive Assistant, assuming this may be important to her as well.
 
Last edited:
Messages
2,087
@BurnA I'm not sure what you mean by "literally" posting it. Could you please explain. Thanks.
Sorry maybe I misunderstood, I thought you emailed them and they asked you to post it online somewhere but now that I read it again I'm not sure exactly what you said, by literally posting I meant mailing, but maybe that's what you did ? Sorry.
 

eastcoast12

Senior Member
Messages
136
Location
Long Island ny
I actually didn't expect to hear from the CMAJ regarding my email. So, the fact that I did is encouraging. 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, http://www.cmaj.ca/letters/submit/cmaj;cmaj.150684v1,

where your letter should be linked. Once your letter is posted with the original article, the editors will review it for publication.

Kind regards,

Executive Assistant, CMAJ 1867 Alta Vista Drive Ottawa, Ontario KlG 5W8 1-866-971-9171ext. 2295/613-520-7116 ext. 2295 Fax: (613) 565-5471 "

The problem is, in doing so, I would lose my on-line anonymity. It's still possible to "Google" my name and get no "hits" that apply to me -- a degree of privacy I have consciously tried to achieve. I signed the email with my real name to give it credibility, but with the expectation it wouldn't be posted on the open internet. So, unless the CMAJ ombudsman takes this on, it seems my efforts will have been for nothing.

Edited to respect the on-line privacy of the CMAJ Executive Assistant, assuming this may be important to her as well.
Do you need to use your name?
 

JES

Senior Member
Messages
1,320
The problem is, in doing so, I would lose my on-line anonymity. It's still possible to "Google" my name and get no "hits" that apply to me -- a degree of privacy I have consciously tried to achieve. I signed the email with my real name to give it credibility, but with the expectation it wouldn't be posted on the open internet. So, unless the CMAJ ombudsman takes this on, it seems my efforts will have been for nothing.

I understand this reasoning well. However, if you have a relatively common name, it would probably be difficult to associate "you" to this particular letter due to the sheer volume of Google results. I myself have a very uncommon name, so I take these precautions though.
 

Old Bones

Senior Member
Messages
808
I understand this reasoning well. However, if you have a relatively common name, it would probably be difficult to associate "you" to this particular letter due to the sheer volume of Google results. I myself have a very uncommon name, so I take these precautions though.

Fortunately, or unfortunately, my name isn't particularly common. Although I am aware of one person in Texas who shares my name.
 
Last edited: