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Australia’s NHMRC ME/CFS Advisory Committee draft report released for public consultation

Discussion in 'General ME/CFS News' started by Simone, Dec 21, 2018.

  1. Simone

    Simone Senior Member (Voting Rights)

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    Australia’s National Health and Medical Research Council (NHMRC) established an ME/CFS Advisory Committee in late 2017. The terms of reference for the committee were to report to the CEO about:
    1. the status of national and international research into ME/CFS
    2. gaps in research on ME/CFS. This will include but not be limited to research on the immunology, psychology, microbiology and virology of the conditions, as well as any health services research
    3. the status of clinical guidance on ME/CFS available to doctors and health professionals
    4. requirements and opportunities for improved clinical guidance
    5. any other issue on ME/CFS that the NHMRC Chief Executive Officer may request.
    The committee’s draft report has now been released for public consultation. Submissions will remain open until Monday February 18, 2019.

    The public consultation process seeks responses to two broad questions:

    1. Does the report accurately reflect the difficulties and challenges faced by people living with ME/CFS?
    2. Do the recommendations in the report address the needs of people with ME/CFS?

    The feedback form has subquestions for each of these broad questions, and a word limit for each response.

    To provide feedback, you will need to create a login to the NHMRC website. You can save your progress and return to the feedback form at any time.

    We hope that many people, including those outside Australia, will read the report and provide feedback.

    More details at the link below:
    https://consultations.nhmrc.gov.au/public_consultations/mecfs-2019a
     
    Last edited: Dec 21, 2018
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  2. Ruth

    Ruth Established Member (Voting Rights)

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    Thanks for all your hard (and sometimes frustrating) work on this important report.
    International responses would be great.
     
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  3. Simone

    Simone Senior Member (Voting Rights)

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    Summary of Committee’s Recommendations for Consideration by NHMRC and the Australian Health Portfolio

    Strategic focus 1: Research quantity and capacity building

    Objectives
    • Encourage hypothesis-generating research.
    • Support new and emerging researchers into the field of ME/CFS.
    • Encourage research translation and community collaboration.
    • Encourage collaborative funding initiatives and minimise duplication of research efforts both nationally and internationally.

    Recommendations:
    • Conduct a targeted call for research (TCR) on ME/CFS pathophysiology.
    • Establish an Australian ME/CFS collaborative research consortium for ME/CFS.
    • For consistency in Australian research, adopt the 2003 Canadian Consensus Criteria (CCC) and the Paediatric Primer (2017) for child and adolescent patient selection and collect common data elements (CDEs).

    Strategic focus 2: Health services research

    Objectives:
    • Report the Australian burden of disease including
    o DALYs to inform policy recommendations
    o child and adolescent impact
    o impact of caring roles for carers of people with ME/CFS
    o clarify health disparities. ​
    • Describe the economic impact of ME/CFS on the Australian economy.
    • Increase awareness of ME/CFS, to help inform policy on economic and social support service accessibility.
    • Highlight funding and research opportunities in health services research fields.

    Recommendations:
    • Undertake health economics analyses.
    • Highlight research opportunities in models of care and service delivery.

    Strategic focus 3: Developing health advice

    Objectives:
    • Provide clinicians with ME/CFS health care resources including clinical guidelines based on the latest research evidence.
    • Develop a clinical pathway within clinical guidelines for ME/CFS management and effective patient support.
    • Collaborate nationally in the dissemination and implementation of clinical resources, including the education of clinicians.

    Recommendations:
    • Update and maximise the uptake of Australian ME/CFS clinical practice guidelines.

    Additional Committee Recommendations

    • Develop Australian capacity through international collaboration.
    • Establish an Australian collaborative biobank.
    • Raise with Australian Institute of Health and Welfare for increased collection of prevalence data and burden of disease reporting.
     
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  4. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    The report seems quite reasonable, but the proof is in the pudding so to speak.
     
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  5. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    I haven't looked but my recollection is that the current guidelines are not very good. If "update" means start again without the CBT/GET idealogues having any say then I guess this recommendation could be ok. But to just say "update" seems a little underwhelming to me.
     
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  6. alex3619

    alex3619 Senior Member (Voting Rights)

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    It looks good in summary on this page. I hope to say more later.
     
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  7. alex3619

    alex3619 Senior Member (Voting Rights)

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    I recall them about Fukuda good. So not great.
     
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  8. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    I presume the latest guidelines are these from 2002

    https://www.mja.com.au/system/files/issues/cfs2_2.pdf

    I have only quickly skimmed them but they are not as bad as I thought they were. For example, the section
    The role of rehabilitation, behavioural and cognitive treatment approaches
    concludes with
     
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  9. Andy

    Andy Committee Member & Outreach

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    http://www.virology.ws/2018/12/24/trial-by-error-australian-draft-report-seeks-comments/
     
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  10. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Very few words on CBT. It seems like the Australian BPS'ers prefer GET?
     
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  11. strategist

    strategist Senior Member (Voting Rights)

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    The situation with GET reminds me of this picture of British colonialism. Patients are told GET is for their own good, but in reality it's just exploitation. There's also the morality angle which is also present in this picture (the priest with the bible) which is the story about patients needing to demonstrate they aren't a lazy, benefit seeking person.

    british-colonialism-granger.jpg
     
    Last edited: Dec 26, 2018
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  12. Ravn

    Ravn Senior Member (Voting Rights)

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    Just giving this thread a bump. Only a little more than a month to go before the deadline. Submissions close 18 February 2019 (Australian time). Anyone, not just Australians, can submit.

    If you possibly can, please make the effort to make a submission, even if only a partial one. Our advocates have worked hard on getting this draft report to be as positive as it is. Let's help them push it further by making lots of submissions. I'm working on mine.

    Register here to make a submission: https://consultations.nhmrc.gov.au/user/register
    Submission guidelines here: https://consultations.nhmrc.gov.au/submission-guidelines
    Download the draft report here: https://consultations.nhmrc.gov.au/public_consultations/mecfs-2019a (39 pages plus 31 pages of attachments)

    Part of the report covers the current situation of research and clinical practice in Australia.
    Part of the report covers the current situation of research and clinical practice Internationally.
    Part of the report covers the current issues and challenges in the ME field.
    Part of the report is recommendations for future directions.

    If you don't have enough knowledge to comment on the first three, or just not enough energy to wade through it all, start on page 21, point 5.3 Committee Recommendations.

    You don't have to do the submission all in one go, there's a handy Save & finish later option.

    The actual questions asked are:
    1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?:
    1b. How well does the report present the challenges facing clinicians in providing care, when there is lack of clarity on diagnostic and management tools, and minimal professional education about the condition?:
    2a. The research and clinical guidance recommendations accurately address the specific needs of the ME/CFS community.:
    2b. The research and clinical guidance recommendations provide an accurate representation of the current gaps in research.:
    2c. The research recommendations inform the CEO of the most effective and strategic research options currently available.:
    For each question there is a comments section “Comments: How could the recommendations be improved? (please limit response max. 300 words)”.

    There's a lot of good stuff in there. Just praising a good point or two, if you don't have the energy for more, will support the committee's positive recommendations.

    However, in some places it is clear the committee couldn't agree and they simply state the differing views. So here it's important with feedback for or against certain views.

    For example, they couldn't agree on the value of establishing an Australian patient registry and/or biobank. Another example, on page 22 of the report:
    Curiously the two references given for this claim – that PEM is not unique to ME - actually show that there are differences between the post-exertional symptoms experienced by patients with other conditions and the PEM suffered by ME patients.

    Reference 73 (bolding mine, CRF=cancer-related fatigue) shows the authors equate the narrow symptom range of post-exertional fatigue with the wider, systemic symptom range of post-exertional malaise.

    Bennett B, Goldstein D, Friedlander M, Hickie I, Lloyd A. The experience of cancer-related fatigue and chronic fatigue syndrome: a qualitative and comparative study. Journal of Pain and symptom management 2007;34(2):126-135.
    I assume this is the self-same Lloyd A as sits on the committee?
    That's an illogical leap of logic to go from from “Women with CFS reported additional symptoms...” to “CRF appears closely related to CFS...”

    Reference 74 (bolding mine) shows that in addition to symptom range, the time pattern of PEM appears to be unique.

    Cotler J, Holtzman C, Dudun C, Jason LA. A Brief Questionnaire to Assess Post-Exertional Malaise. Diagnostics (Basel) 2018;8(3):E66.
    Not sure how to interpret the insistence of the unnamed committee members that PEM is not unique to ME.
    A charitable interpretation would be that they want to coattail on other, more well-funded illnesses' research for the benefit of ME/CFS. This doesn't excuse their apparent lack of understanding that fatigue does not equal malaise, post-exertional or otherwise.
    A less charitable interpretation would be a stubborn determination to twist any data into a cherished, pre-conveived idean no matter what the data actually says.
    A similarly little charitable interpretation would be that it is an attempt to keep ME/CFS firmly in the broad category of fatiguing syndromes, and not let it slip into other categories such as metabolic, neuro-immune, or [insert your pick].

    I've actually always been interested in the question of whether PEM is unique to ME or not. There's no definite answer to that, it simply hasn't been looked for yet in many conditions. If it did occur in other conditions that would be an interesting opportunity to share research findings (and funding). If it doesn't occur in other conditions then that points directly to the core of ME and needs to be investigated much more thoroughly.

    I've long kept an eye out for possible incidences of PEM in other conditions but so far, on closer inspection, every claim (like the one above) has revealed itself to be post-exertional fatigue or, less often, post-exertional pain (in FM), never the systemic symptoms and time pattern of ME-PEM. The closest I've found is Overtraining Syndrome (OS). Clearly there are significant differences to ME-PEM but some of the proposed physiological processes in OS are close enough to those looked at in ME that a comparison study would be worthwhile.

    An overview of OS if anyone is interested: Sports Health. 2012 Mar; 4(2): 128–138. Overtraining Syndrome A Practical Guide
    Jeffrey B. Kreher, Jennifer B. Schwartz https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435910/
     
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  13. Hutan

    Hutan Moderator Staff Member

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    The 2018 Hodges study of CPETs of people with ME and people with MS might be a useful study to cite to indicate that the physiology of PEM appears to be different to the fatigue of MS.
     
    Last edited: Jan 7, 2019
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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    I've still not found time to look at this report, but I'm sure that carefully done submissions would be useful.

    Also, remember to praise the good bits that others might want to try to remove with their own submissions.
     
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  15. Sean

    Sean Senior Member (Voting Rights)

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    About 3/4 of the way through. General impression is that it is a big and critical step in the right direction. Haven't found anything that I would seriously disagree with, though there are one or two substantial points I think need to be further clarified.

    For anybody short on reading capacity I suggest just reading the Key Points for each section, they seem to sum up the content quite well.
     
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  16. Simone

    Simone Senior Member (Voting Rights)

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    For anyone who would like to contribute but is feeling overwhelmed at the thought. We are doing a Read-Along over on the #MEAction Network Australia FB page, to spread the reading of the report over the coming 3 weeks. We will also have a discussion about the public consultation comments too.

    A couple of things I would say about providing feedback on the report:
    1. We really want to show NHMRC (and the broader government) that lots of people are paying attention to what they’re doing. So it’s important that we have quantity, as well as quality, in the feedback.
    2. Consider it providing feedback, rather than making a submission, as it will probably make it feel less overwhelming and onerous. It doesn’t need to be carefully worded. Bullet points are fine. NHMRC staff will collate all the feedback and give a summary to the committee (we will also have access to all the submissions, so can read them directly if we wish). So the key will be the points which are made, and how often they are made.
    3. Even if you haven’t read the entire report, but have read some bits of it and would like to comment on those, please submit some feedback.
    4. Please remember to comment on the parts of the report which you think are good, as well as areas for improvement. Both will help us on the committee.
     
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  17. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    If patients with post-cancer fatigue, post-polio and post-(select other neurological conditions) suffer from PEM, they may well have the same condition as us.
     
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  18. Simone

    Simone Senior Member (Voting Rights)

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    Thanks, @Ravn. Yes, we have worked really hard! We definitely need lots of people providing feedback to give us extra support when we go to the next meeting.

    It certainly is. I will leave you to interpret that.
     
  19. Sean

    Sean Senior Member (Voting Rights)

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    I have not seen anything yet which makes me seriously doubt that the PEM in ME is quite distinct, perhaps even unique.
     
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  20. MyalgicE

    MyalgicE Senior Member (Voting Rights)

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