Australia’s National Health & Medical Research Council’s ME/CFS Advisory Committee’s final report released

The final report from the NHMRC ME/CFS Advisory Committee has been released. There were more than 250 submissions received on the draft report during the public consultation process in Jan/Feb, which is one of the highest number of submissions they’ve received for a public consultation process. The campaign to encourage submissions (through Read-Alongs and key point summaries prepared by ME Advocacy Network Australia and Emerge Australia) was huge, and it was great to see such a strong response!

Already, two of the committee’s recommendations have been implemented: a health economics study (applications have been received and reviewed and we are waiting to hear the outcome of the process) and a $3m grant. We will continue to lobby for more of the report’s recommendations to be implemented.

https://www.nhmrc.gov.au/about-us/publications/mecfs-advisory-committee-report-nhmrc-chief-executive-officer

 

A huge thank you to our advocacy organisations and patient reps on the Committee. And thank you to those who helped promote the public consultation process. 250 submissions include a massive contribution from our community that has helped shaped this document and helped the committee to understand the issues faced by people with ME/CFS in both a medical and government support capacities.

 

Disappointing the NHMRC dragging their feet to finally release this report and yet still no outcomes from the CEO.

NHMRC told ME Australia that the CEO’s response to the report was expected ‘middle of the year’.
(https://meaustralia.net/2019/05/19/research-council-expects-to-fund-me-and-cfs-projects-in-2020/)

Thankfully the Health Minister announced $3m but that will be administered by the NHMRC in mid 2020 (at earliest) and they aren’t giving any assurances that it will go to biomedical research funding.

We know that a member of the NHMRC advisory committee (and current NHMRC $$ recipient) is calling for more biopsychosocial research into what they call ‘MECFS’ but is chronic fatigue: https://meaustralia.net/2019/05/16/...or-more-biopsychosocial-research-into-me-cfs/

Final report on recovery rates still appalling unfortunately and says there is ‘treatment’ which improves people.

 

This isn't half-bad. Skimming through since there's a lot but at least it acknowledges most of the issues. Not sure if it will lead to anything but it's relatively good. Sliver lining but I don't see any of the usual overt bullshit, the ideologues did not bully their beliefs through.

One notable thing is on page 8 (14 of the document), the "current issues and challenges" are literally everything that was warned about about the 2002 guidelines. It's basically a "we told you so". This should matter. We'll see if this fundamental problem is properly understood.

Mostly honest assessment of the issues with PACE and the Cochrane review on page 11 (17 of document). Pretty notable that the only support of PACE comes from the MRC that only says all i's were dotted and all t's were crossed. As a response to requests for reanalysis, this is a very underwhelming level of support. Basically: "we investigated ourselves and cleared us of any wrongdoing".

Good highlight of the disparity between patient testimony and physicians' perception on page 12/18. It mostly presents the controversy over CBT/GET as a "some researchers say" and "patients overwhelmingly say" and presents them as some equivalent but otherwise is mostly fair as the real controversy truly is that some researchers are just making stuff up and patients strongly object to those made-up claims.

Good overall acknowledgement across multiple pages that PEM is the defining feature of ME and should receive proper attention. Weird note that some committee members "indicated" that PEM is not unique to ME, no evidence provided.

Multiple mentions of the need for hypothesis-generating research, aka what the ME community has consistently asked for the last several decades. A full section of this document could have simply been titled "WE TOLD YOU SO".

Good acknowledgement of what is happening internationally, which is a key problem with the UK echo chamber that pretends nothing is happening outside and the IOM report is just as much of a myth as unicorns. The Ontario ministry of health released a similar report last year (including FM and MCS) and I can't remember it paying this much attention to what others are finding. This is good to validate that these findings aren't unique or even particular to Australia.

Attachment D is actually a pretty good list of researchers and research centers, though it includes some charlatans like Lloyd. I searched and no Fink, which is interesting considering his current efforts with the WHO to kneecap us.

I think that to someone who isn't prejudiced and is willing to challenge popular myths this is a fair report. I'm just not sure it will be enough to sway those who are prejudiced, the vast majority. This would be a good first step. Except it's not a first step. It would have been nice to more thoroughly acknowledge the disaster of the 2002 guidelines but it's probably asking too much to hope for accountability on this failure.

I think it's worth bringing this to the NICE committee. It's not perfect but let's make it the enemy of better.

 

Thanks to all those involved in ME/CFS advocacy in Australia. I wrote this brief overview of my thoughts on the report:

The Bad
There were some passages in the report that bothered me. It notes for example that fatigue syndrome was listed as a neurological and psychiatric condition in the ICD-10. I thought this was once clarified by questions of the UK government to the WHO, that ME and CFS are only listed once in the ICD-10, and that is under code G93.3. The Neurasthenia/ fatigue syndrome was mostly there because this diagnosis was made, until recently, in some Asian countries. At least that's how I understand it.

The report overestimates the recovery rates by relying on Australian data. I'm not sure how reliable or relevant the data from the Australian Burden of Disease and Injury Study (ABDS) is. It says that "Median symptom duration ranges from 99% recovery after two years in post-infective fatigue syndrome to cases fluctuating at around 50-80% of their previous healthy state." Clearly, this is something else than ME/CFS. The study also focused on the recent prognosis study by Kathe Rowe (a member of the committee) which said that 68% of adolescents with ME/CFS reported full recovery after 10 years. I think her data showed that 68% did have some remarkable improvements and were able to function again, but that they probably continued to have symptoms and disability higher than healthy controls. In the study by Bell et al. 37.1% considered themselves resolved of illness at follow-up while 42.9% considered themselves well but not resolved.

The report discusses the concerns raised about GET and the PACE-trial but in the end it writes: "The Committee noted that GET should not be offered as a cure for ME/CFS but that it might have a role in a patient’s overall management strategy, helping with any secondary anxiety, de-conditioning and stress." I have no idea why they would say that. The Cochrane review indicated that GET doesn't improve anxiety, at the end of treatment nor at follow-up. And the objective data show that it doesn't help much with deconditioning either. I would argue that GET causes patients anxiety and stress if they are pushed by medical professionals to follow GET despite their concerns that it might worsen their condition. And if you want to avoid deconditioning there are other options such as pacing. I wonder if the presence of Lloyd and Broadbent who have recently studied and promoted the use of GET might have influenced these statements in the report. In my opinion, they should have been excluded from developing recommendations on the matter relating to their professional conflict of interest.

The Good
The bad issues, however, seem less important as the committee was mostly established to advise NHMRC’s CEO on current needs for research on ME/CFS and what needs to be done in regard to diagnosis and treatment. In that regard, the report makes a lot of good recommendations.

For one, the report acknowledges the problems with the 2002 guidelines and says that new guidelines should be written. it reads: "The Committee advises updating or developing new Australian ME/CFS clinical practice guidelines as well as developing General Practitioner educational material and patient engagement strategies." Of course, we don't know what will come out of that but given how problematic the 2002 guidelines are, this certainly seems like a good thing.

The report also writes that ME/CFS patients face difficulties in getting access to disability payments and support. Although outside it's scope it advises the responsible government agency, the National Disability Insurance Scheme (NDIS) to do something about this. The report says that NDIS should recognize ME/CFS as a serious debilitating condition, list it under neurological conditions and that "assessment guidelines" be developed in collaboration with clinicians with expertise in the management of ME/CFS and the ME/CFS community. It's always easy to say what others should do, but I think it's good that this is mentioned in the report. Australian ME/CFS advocates can now use this in requesting action from NDIS and other agencies.

The report points out the problems with the most commonly used case definition in ME/CFS research: The Fukuda criteria. The report writes: "these criteria have been proposed to be overly broad in defining symptoms. This may lead to further lack of consistency, heterogeneity of patient cohorts and the potential for inclusion of patients who do not have ME/CFS, as these criteria do not have PEM as a mandatory symptom." The report advises using more recent diagnostic criteria such as the Canadian criteria or International Consensus Criteria.

The report recommends studying the burden of disease and the economic impact of ME/CFS. I'm happy to hear that according to Simone, applications have already been received for this. The report also calls for international collaboration and an Australian ME/CFS collaborative research consortium so that researchers share data and resources more easily.

The most important thing, however, in my view, is that the report advises a "targeted call for research (TCR) on ME/CFS pathophysiology". As I understand it a TCR is much like an RFA in the US: it puts money aside for a particular societal need that deserves more research. As the report explains, a TCR can "stimulate the Australian ME/CFS research field by bringing new, emerging, early and mid-career researchers into the field." The report could have been full of nice words of how more research is needed, but without a recommendation for a realistic mechanism to stimulate ME/CFS research, it would have been toothless. So it's important that a TCR is recommended. If I'm correct, an amount of 3 million dollars has already been promised for ME/CFS research by the Minister of Health Gregory Hunt. That's a good example for other countries as it shows that it's possible to set aside funding to stimulate ME/CFS research. You don't have to wait until researchers decide they want to study ME/CFS.

So all in all, it looks like this is a good report and that positive development will come out of it if its recommendations are followed up on. Many thanks to all the efforts from Australian ME/CFS advocates for making this possible!

 

@rvallee The report has already led to positive outcomes. Two of the committee’s recommendations have been implemented: a health economics study (applications have been received and reviewed, and we’re waiting on an announcement of the outcome) and a $3m research grant (a targeted call for research which, as @Michiel Tack said, is much like NIH’s RFAs. This hasn’t progressed beyond the announcement yet). These were implemented by the department of health based on the draft report. We’re waiting for the CEO’s response to the remaining recommendations.

 

Yes, you are right, we are waiting for CEO’s response.

So therefore no, the report has not led to outcomes, they were driven by other factors, ie Health Minister’s decision. CEO had not even seen report when those decisions made.

 

Yes, she had. The draft report had been circulated to NHMRC’s executive team (including the CEO) and the department of health.

 

Please, when a member of the Committee, who has had ongoing access to confidential information about the Report process and the work done before the Report's release, says a fact is exactly that, a fact, you might consider that she knows what she's talking about.
Fact: There have been two outcomes *from the recommendations in the draft report*.

 

It was wonderful to identify the impact of the patient submissions. One of my friends was able to quickly identify a sentence that she proposed, which was pulled out of those 250 submissions!

 

I was rapt that they read and took on board the submissions to the Joint Parliamentary Committee by Emerge and ME/CFS Legal Resources Australia and the submission the NDIS group made to the National Disability Agreement Review. The fact that the summarised the recommendations made in these submissions to the NDIS (National Disability Insurance Scheme) will help us immensely with advocacy going forward in relation to NDIS access, namely

• recognition of ME/CFS as a serious debilitating condition
  
  
• the condition should be listed on the NDIS under list B: neurological disorders
  
  
• that assessment guidelines for NDIA assessors be developed in collaboration with clinicians with expertise in management of ME/CFS and the ME/CFS community.
  

 

I am looking forward to reading those submissions when they are finally published!

 

Invest in ME's submission, www.investinme.org/Documents/NHMRC%20Australia/IIMER%20Submission%2019343%20NHMRConsultation%20on%20draft%20report.pdf

 

Haven't seen this posted yet but public comments on the report were published: https://consultations.nhmrc.gov.au/public_consultations/submissions/mecfs_2019a. The report exposed a complete disaster. The comments plainly state that even the report is putting it mildly.

I checked several and the overall theme of the comments is that the 19 years and counting of the current psychosocial CBT/GET guidelines in Australia are a complete and total Dorian-in-the-Bahamas-scale disaster. It's as if a nuclear bomb had been set off in a hospital. I would be thoroughly ashamed if I were a professional involved in this pathetic state of affairs. It reflects a status quo so bad that it should warrant criminal investigations, if people with ME were not considered second-class citizens anyway.

If those were comments about a restaurant it would basically be so devastating public health services would not even bother doing anything but closing the establishment and lighting it on fire with napalm flamethrowers for the good of the local community. The report would not really focus so much on the rat droppings everywhere as actual rotting corpses overrun by cockroaches and several fly nests, including some species previously unknown to humankind, in the back room, front room in fact in every room, plate and seat a rotting pustulant corpse.

It is beyond any refutation that the status quo of the psychosomatic model of ME is a top contender for worst failure in the entire history of medicine. This is failure beyond what any reasonable person would even believe is possible. As a 1-10 rating it would rate a big bold 0. Those responsible should be expelled from the medical profession with extreme prejudice and their entire career thoroughly re-examined with the same suspicion as a prosecutor found to have falsified evidence in court.

So congrats to dementors Wessely, Sharpe, White, Lloyd et al., you will truly make history as some of the worse of the worst among your profession.

 

The NHMRC CEO has just released her response to the report.

I’ve provided context and history on her main points:

https://meaustralia.net/2019/10/24/medical-council-responds-to-advisory-committee-report/