Updated: Dec 2, 2019
GET, CBT and the CCDP
BC Women’s Hospital Complex Chronic Diseases Program (CCDP) has revised their Clinical Protocol: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), made available to clinicians through their Clinician Resources pages.
Of particular note is section 2. Physical Activity. While the revised protocol still refers to there being Level A evidence (which there is not), it goes on to refer to “The discredited PACE trial has caused much confusion. It used Graded Exercise Therapy (GET) as a treatment for ME/CFS; it promoted the idea that patients were simply deconditioned and that GET would make them better.” This is a much appreciated revision as the PACE trial was responsible for clinicians around the world prescribing exercise to ME patients, causing most patients to become more ill.
Still confusing, however, is that the CCDP’s revised Protocol refers to the Cochrane Review as evidence that activity and exercise are good for ME patients: “Unfortunately, many have misinterpreted the fact that this trial [the PACE Trial] has been retracted* with the idea that activity or exercise is not helpful for patients with ME/CFS. This is incorrect as seen in a recent Cochrane Review. Activity and exercise, while not a treatment for ME/CFS can help with symptoms as long as patients stay within their energy envelope “. However, the Cochrane Review was limited to studies which used diagnostic criteria that did not include post exertional malaise (PEM) as a core symptom.
However, the CCDP Protocol goes on to advise that “Exercise should be construed within the larger context of activity. Patients with low activity tolerances should use their limited energy to perform activities of daily living rather than formal exercise. Formal exercise can be considered if the energy envelope permits and does not cause post-exertional malaise.”
While this latest revision of the CCDP ME Protocol is an improvement, we hope that future revisions will underscore the danger of overexertion for ME patients, describe what the consequences of such overexertion can be, and make strong recommendations that patients work with physiotherapists trained to deal with ME patients in order to plan an appropriate activity program.
Also of note is Section 6. Phsychological and Behavioural Therapies. This section also refers to Level A evidence, which there is not. However, this revision states that “While CBT [cognitive behavioural therapy] is not a treatment for ME/CFS, it can help patients develop coping strategies….”, and improvement on the idea that CBT would help patients with “ beliefs and behaviors that can interfere with your recovery”.
* Note: the PACE Trial has yet to be formally retracted.
For more links to information the CCDP is sharing with doctors looking to learn more about ME:
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New Medical Director
Hoping for the arrival of a knowledgeable and experienced Medical Director to assume his/her duties by Winter 2017.
CCDP World Café and Online Survey
Thank you to the ME and FM patients and carers who came out on a lovely sunny day to participate in the CCDP’s World Café at BC Children’s Hospital Research Institute on 27 May as part of the Society’s May Awareness events. We know it wasn't easy for any of you, and truly value your efforts to join us and share your thoughts and experience. It was wonderful to meet you all, and important to hear you.
Many thanks also to the staff from BC Women's Hospital and the CCDP who volunteered their time on a Saturday afternoon to put on such a great event in partnership with us. The goal was to present questions which could lead to actions to be implemented by the CCDP in the immediate future. It was also agreed to include one question which could involve "blue sky" or more challenging suggestions, to give patients the opportunity to share what they are wanting/needing in the long run.
The organisers did a great job at creating an event which enabled participants to be involved. Facilitators and note takers did a great job of eliciting and capturing all the suggestions and feedback, giving everybody a chance to speak. Participants were extremely engaged, providing excellent feedback and ideas for going forward. A wide range of experiences were represented, from those recently diagnosed, to those who had been sick for decades, some who are CCDP patients or on the wait list, others who had been discharged, and others who had never been patients. Responses were very honest, direct and respectful, including critiques of the past and current program, and some excellent and creative suggestions for the future. The staff took everything on board with respect and encouragement.
The online survey posed the same four questions answered at the In-Person event, and ran for a week, starting at the same time as the World Café. While super convenient to be able to participate from the comfort of one’s own home, and having the luxury of a week to participate, the online survey had a few glitches: there was a word limit, which had not been discussed, and the program did not save users’ work. With cognitive impairment being an issue for most patients, these unexpected limitations meant that many participants were frustrated at spending more time and energy than anticipated on the survey, leading some to give up. We will raise these issues at next week’s CAC meeting to ensure that future surveys cater better to the needs of our community. At that meeting we will also receive the results of the survey, which we will share with you all.
It is with great sadness that we share the news that Gwen Barlee, the passionate and powerful Vancouver based activist for the environment and Lyme Disease, has died. Gwen was a Patient Representative for the Lyme community on the Community Advisory Committee (CAC) at the Complex Chronic Diseases Program (CCDP), eventually leaving in frustration to focus her attention on a national outside strategy. Her short tenure on the CAC gave us all the opportunity to see a top patient activist in action. She was a fierce and bold advocate, and we will miss her.