The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

The province of Alberta (Canada) releases its ME guidelines for clinical practice

Discussion in 'General ME/CFS News' started by Kati, Apr 14, 2016.

  1. Kati

    Kati Patient in training

    Messages:
    5,451
    Likes:
    19,501
    http://www.topalbertadoctors.org/download/1929/MECFS CPG.pdf?_20160414151652

    The guidelines are based on the Canadian Consensus Criteria and also includes IOM guidelines and litterature reviews.

    While the treatment recommendations for CBT and GET gets mentioned, pages 11-13 include the rationale for these treatment modalities.

    It is very disappointing that there is no recommendations for viral and immunological blood work for our patient population. We are still in dinosaur ages of coping and supportive care, whatever that means. However, the Alberta guidelines seem to steer away from the Central Sensitization theory at first glance (I haven't read everything) which is good to see.

    I dwelled all day on the fact that the CCC was published in 2003. What will it take for patients to access competent medical care in this country? How many more decades until clinical trials and access to drugs?
     
    Jennifer J, PatJ, helen1 and 14 others like this.
  2. actup

    actup Senior Member

    Messages:
    162
    Likes:
    471
    Pacific NW
    Thanks for the posting. Canada is the least dirty shirt in the wash. I will read the new guidelines after some rest. The
    CCC is still the gold standard. That said I believe it will be difficult to get all of these countries who have borrowed a chapter from the UK approach to disability allowances, cbt and get, to backtrack.Too much money is at stake and we are moving into a worldwide recession. It will be quite a fight even with the fraudulent science exposed for all to see
    but we will have lots of new allies this time.
     
    MeSci likes this.
  3. Kati

    Kati Patient in training

    Messages:
    5,451
    Likes:
    19,501
    Don't look up to Canada much, you know. Dr Carruthers clinic was shut down in the 1990's after Wessely came to Vancouver and told our drs patients with ME had false illness beliefs. From my vantage point, Carruthers was the black sheep, and worked underground for most his career.

    Patients here do not get respect. Ontario folks have it pretty bad. For most, across the country, getting a ME diagnosis is like falling into a black hole.
     
    MeSci, helen1, L'engle and 3 others like this.
  4. actup

    actup Senior Member

    Messages:
    162
    Likes:
    471
    Pacific NW
    I didn't realize it had become so difficult for Canadian Patients to get CFS diagnoses. In theory I'm a big fan of centralized health care but it isn't working well for me/cfs patients. PWC may do better in the US due to less group think among physicians and our more decentralized health care system.
     
  5. Kati

    Kati Patient in training

    Messages:
    5,451
    Likes:
    19,501
    I was a RN before getting sick so I can speak on both sides. Our socialized health care system is very good if you have a mainstreamed disease. Cancer, heart attack, HIV, or need a transplant. It is extremely efficient if you are a trauma victim or are booked for surgery (though the wait lists can be horrendous) It doesn't do well for a disease like ours where there are no structure, and no approved protocols. Then we are left behind.

    i have sought out health care in the US on more than one occasion and paying for a service means that you get what you want and what you need. It's simple as that. But then it would be nice to have all the money to perform the testing and to pay for treatments. Unfortunately the wallet gets lighter and lighter as time goes by.

    And it reminds me that my health care system should have been there for me all along, because I have paid for medical services. It makes me really mad to have been discarded, or simply being offered CBT as the only treatment. It's nonsense.
     
    Last edited: Apr 15, 2016
    Mij, MeSci, alkt and 8 others like this.
  6. Old Bones

    Old Bones Senior Member

    Messages:
    807
    Likes:
    4,865
    Thanks, @Kati , for posting this link. By going a bit deeper, it appears someone in Alberta Health Care has done their homework with respect to CBT and GET. On page 6 of the main document under "Etiology", the Figure 1 link leads to the following comments:

    "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. First, these therapies were developed based on the assumption that ME/CFS is a psychological condition in which “inaccurate and unhelpful beliefs, ineffective coping behaviour, negative mood states, social problems and pathophysiological processes all interact to perpetuate the illness.” 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; physical illness severity and not psychological distress is the strongest predictors of outcome and measurable pathophysiologic processes are reported in thousands of peer reviewed papers. Both the recent reports by the National Institutes of Health and the Institute of Medicine state that “ME/CFS is not a psychological condition.”

    Second, the patient selection for the CBT/GET trials that form the bulk of the “evidence” for their effectiveness used the Oxford criteria despite the obvious shortcomings as discussed. These criteria lack specificity and allow many psychiatric patients to be misdiagnosed with ME/CFS.

    Third, 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. Patients in several large national surveys report that when exercise is increased causing over-exertion relapse of symptoms can result. Although harms are not well reported in the RCTs, one trial reports patients receiving GET reported more adverse events compared with those receiving cognitive behavior therapy (CBT), adaptive pacing, or usual care; one trial reported more withdrawals of patients receiving GET, one trial had a high percentage of patients refusing repeat exercise testing, and several other trials reported more withdrawals of patients receiving GET, all compared with controls. 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. No study of CBT and/or GET has measured post exertional malaise (PEM). Many of the CBT and GET studies use the Oxford criteria which have been severely criticized by the Association for Health Research Quality. . . . Therefore, CBT can be helpful in ME/CFS but is rarely if ever curative or sufficient."

    Based on the above, I feel confident that PACE will not be "landing" in Alberta, and I sincerely hope this becomes the case in other jurisdictions, soon. A very good day for Canadian, and especially Albertan, ME patients. I am ecstatic!
     
    Last edited: Apr 15, 2016
    Mary, taniaaust1, sue la-la and 19 others like this.
  7. Old Bones

    Old Bones Senior Member

    Messages:
    807
    Likes:
    4,865
    I've often wondered what happened to Doctor Carruthers, apart from his later involvement in drafting several well-received ME documents. I saw him twice in the early 1990's, and found his understanding of ME to be so accurate, I speculated he had an ill family member.
     
    alkt, L'engle, JaimeS and 1 other person like this.
  8. Amaya2014

    Amaya2014 Senior Member

    Messages:
    215
    Likes:
    541
    Columbus, GA
    In summary, all patients with ME/CFS have post exertional malaise (PEM) which limits the ability to exercise. No study of CBT and/or GET has measured post exertional malaise (PEM).
     
    Last edited: Apr 15, 2016
    Mary, sue la-la, ScottTriGuy and 4 others like this.
  9. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,846
    @Old Bones that is really a good find.
    Its just a pity that on page three they list GET as an evidence based intervention.
    Still, its certainly progress that such criticisms of CBT/GET are getting into published literature. Someone is doing their homework.
     
    Dolphin, helen1, medfeb and 3 others like this.
  10. Old Bones

    Old Bones Senior Member

    Messages:
    807
    Likes:
    4,865
    I agree. The biggest risk is that physicians using the guidelines don't take the time to investigate the links that provide additional detail before advising patients. That places the onus on patients to be informed, as usual. But, at least with guidelines such as these, patients have credible backup that supports their lived experience. I'll definitely be taking a printout to the next appointment with my (Alberta) doctor. If all of us do the same, surely the news will slowly get out.
     
  11. Amaya2014

    Amaya2014 Senior Member

    Messages:
    215
    Likes:
    541
    Columbus, GA
    @Old Bones I keep considering this in regards to my docs. I (maybe wrongly) consider their internal dialogue if I hand them a copy of the IOM document (short or long form).

    " oh the nerve...you want me to read this and potentionally educate myself?! Don't you see I'm too busy "practicing" medicine to be bothered with details"
     
    MeSci, alkt, Mel9 and 3 others like this.
  12. Old Bones

    Old Bones Senior Member

    Messages:
    807
    Likes:
    4,865
    @Amaya2014 Unfortunately, it isn't only doctors' "internal dialogue" we have to contend with. A few years ago, following advice from a sleep specialist resulted in the worst ME crash I've ever experienced. I took a copy of the ME "International Consensus Primer for Medical Practitioners" to my next appointment, with the advice regarding sleep highlighted. The specialist treated the document as if it were on fire. He threw it on the floor at my feet, while stating he knew none of the doctors involved in writing it, and that it meant nothing to him. This is the first, and only, time I've literally screamed at a medical practitioner. How he could later describe me as "pleasant" in his report to my physician, I'll never know. Regardless, I didn't return to his practice.
     
    Last edited: Apr 15, 2016
    sue la-la, ryan31337, MeSci and 8 others like this.
  13. Amaya2014

    Amaya2014 Senior Member

    Messages:
    215
    Likes:
    541
    Columbus, GA
    Probably realized you should have beat the crap out of him/her for that type of behavior or should've reported them.

    I got a crappy response from a NP when I provided the medical notes from my CFS specialist. Her response..."who is this MD?" "What is this?...he is recommending nutritional supplements is all I see". That was not true because there was a very detailed therapy plan in guidelines with CCC recommendations.

    Her response was a consult to a physical therapist?! The joke was on her because that PT had extensive knowledge of CFS and wrote extensively that I was not a good candidate and was in greater need of referral to a renowned Fatigue research and treatment medical center.

    Of course, she ignored that but I never went back to her anyhow.
     
    sue la-la, alkt, Mel9 and 1 other person like this.
  14. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,846
    Reminds me of when I brought Fluge and Mellas papers to an immunologist. He completely dismissed them before reading them fully. He then prescribed GET/CBT because it was the only evidence based treatment.

    I think doctors just don't like to be surprised by their patients and they don't like their patients to know more than them.
    It's such a stupid and ignorant attitude.
     
    helen1, MeSci, alkt and 6 others like this.
  15. Amaya2014

    Amaya2014 Senior Member

    Messages:
    215
    Likes:
    541
    Columbus, GA
    I'm scoping out a functional medicine Doctor as some people have recommended them on this site.

    She was nice enough to provide me a telephone consult (for free). Although she says her testing goes well beyond the average doctors she does regard CFS as its own clinical entity. But then she also stated that CFS is still considered a diagnosis of exclusion.

    That of course alarmed me that she is not as up to date as she believes. I still think it's worth a try...so I'll approach cautiously.
     
  16. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,895
    Likes:
    10,076
    @Old Bones

    Your above post#6 on Alberta halth care sounds very positive. Do you have a link for the quote you gave?
     
  17. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,846
    I'm not oldbones but I can tell you It's in the first post on this thread. ;)
     
  18. Old Bones

    Old Bones Senior Member

    Messages:
    807
    Likes:
    4,865
    @Kati provided the link in the original post. My quote was found by following an embedded link on page 6 of the main document -- Figure 1 under the topic "Etiology".
     
  19. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,895
    Likes:
    10,076
    Oh, thanks. A problem for me with posts--I'll read what's up now on the thread and have no memory whatsoever of what's been said previous or even what it's all about any more. I'll have a look at the doc and maybe use bits to share elsewhere.
     
  20. L'engle

    L'engle moogle

    Messages:
    1,557
    Likes:
    2,336
    Canada
    I've never had a Canadian doctor mention nor use the Canadian Consensus Criteria.
     
    Kati, helen1 and ScottTriGuy like this.

See more popular forum discussions.

Share This Page