Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Thanks for summarising that so quickly @Andy.

 

Oh - I thought making a submission would add me to the list. *sigh*

 

With the assumption that the authors of these studies are totally trustworthy and not hiding the harms in creative ways that cannot be discovered from the published information.

Getting worse from overexertion is obvious that it's really a mystery how the studies are achieving such low rates of harm (<10%). The >50% of patients harmed in surveys is much more realistic.

 

@Hilda Bastian I echo every word of Trish's comment here

Looking for the fundamental flaws in the evidence is not best done by those who have proved themselves already obtuse to them, so I too hope & pray that we are proved wrong.
I thank you for all your hard work Hilda & wish you all the best with the process, i recognise it wont be the easiest project you've worked on!

 

I too entirely agree with your post #1023 @Trish.

I don't think you need to apologise for being grumpy. The whole Cochrane process of delay after delay, and protection of the status quo, would try the patience of a saint.

I too hope we are proved wrong @JemPD.

I am glad to see the process become more transparent today @Hilda Bastian .

 

Another massive disappointment. Where are the people who have been fighting for a proper review? I am not convinced that there is anyone on this panel who understands the issues and the science.

I am a great admirer of Lily Chu, but find the experts from the US do not understand the depths of the problem with the rubbish research that pours out of the UK BPS clique.

If they were not able to make a formal announcement asking for nominations for patient representatives that was clear enough for S4ME to understand what hope is there for a decent review?

It is vital that severe ME is taken into account. The 25% group (not represented) found that many of their members had not been severe until they had been forced to exercise, does the whole panel understand this?

Is someone who also has issues with depression which can be improved by exercise going to understand that exercise has no positive effect on ME, none, nothing at all. We continually do more than we know we ought to so if our ME was getting better we would have no need to build up a level of activity.

I share the experience of many that I thought I was improving, did more and more then crashed to the point I have not walked for 23 years.

I feel betrayed again but would welcome being proved wrong.

 

To keep our members informed, S4ME was informed at 10:00am UK time that we weren't selected to be one of the patient representatives on the advisory group.

 

Today?

 

Michael Clarke:

His handiwork:

https://www.ox.ac.uk/admissions/graduate/courses/msc-evidence-based-health-care

This doesn't provide details which would be illuminating.

My preliminary feeling on this is to put Cochrane well out of mind and concentrate on possible positive developments in the biomedicine of ME. As we know understanding that is likely to make whatever else is said moot.

So much effort being made on behalf of exercise and how much under what circumstances. Yet this is much easier to figure out all on our own over time as sick people.

And although it is not what is under advisement here it would be so much more helpful if that level of effort that has gone into when and how to exercise was put into meeting the needs of PwME in terms of home care, aids, guidance on hospital visits and a long list of other social /medical needs.

Along with ramping up biomedical knowledge.

From that POV this huge absorption of time being forced to deal with something so peripheral to our well-being as exercise is a tragic waste if rather necessary to put an end to the harm that it has caused.

 

To temper my comments on George a little, he is the author of "In the Expectation of Recovery", https://www.centreforwelfarereform.org/library/in-the-expectation-of-recovery.html, an in-depth look at PACE, which was published shortly before S4ME launched.

It was linked to in the article discussed here, Will The UK Establishment Finally Stop Denying The Reality Of ME? Huff Post and David Tuller has referenced it around that time as well.

In 2015, he had an article published in the Lancet Psychiatry, "In non-blinded trials, self-report measures could mislead", https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00089-9/fulltext, and he has also contributed to the Dialogues to a Hidden Illness project.

 

I was very surprised to see that these had already been chosen; I thought this report was to keep us updated on the progress of the process but it seems to be more of a fait accompli.

 

There would likely be accusations of bias otherwise. There will be accusations nonetheless, it's just noise, but we are still at the stage where we politics have to play out a bit.

As long as the process is rigorous I don't think it will matter. When it fails it's because no one is there to actually enforce it and people just push their position freely without regard for evidence or reality. This can't happen here and there are several people involved with genuine experience. Really pleased to see Davenport, he is a tireless (heh) advocate for physical therapy and truly understands the issue.

Most noteworthy is that no Cochrane group wanted it. That's puzzling, that there should be no group dealing with chronic health problems. Seems like a massive blindsight, but it certainly spells plainly the important chronic illness has in medicine: out of bounds.

There is a bittersweet effect however, knowing that the current review will stand for many more months, still doing harm, which unfortunately indicates better than anything Cochrane's commitment to patient safety: also out of bounds. That will continue to be a serious indictment of the ivory tower effect, how medical institutions are too far removed from patient outcomes to work in complete isolation without a representative sample of patient stakeholders holding them to account.

I especially like the need to look at the history spelled out clearly in the priorities. As long as this topic remains isolated from its context and history, including the total separation from both neurology and infectious diseases, it's simply impossible to make progress. This is an important part and so critical because of the added urgency caused by Long Covid, with millions of lives hanging in the balance, stuck between a stubborn rock and a very hard place. No pressure, but the stakes are very high.

 

Great that you are happy to discuss the delay and how it came to be. Perhaps you can say what the original plan was, what had to be re-negotiated, why and with whom, and why there was a desire to still reach the same goal? From what I gather, the desired goal is to write a new exercise review come what may, and that is not negotiable. What will a new Cochrane review add to what NICE have just done in their review for the new ME/CFS guideline? A strength of the NICE process is that it looks at all the evidence for interventions for one (hopefully) clearly defined patient group rather than one intervention at a time for a less clearly defined patient group, a patient group which may well be defined differently by different review teams looking at one intervention on its own. With NICE, there is also a clear distinction between the people who do the technical review and quality assessment of the evidence within a strict scope set (with the input of patients), and the committee (also including patients) who write the guideline. The reviewers have no vested interests in, opinions about, or experience of any of the interventions, as this is not necessary to identify the outcomes measured, or evaluate the quality of the research methods used.

 

The constant framing of ME/CFS around the issue of exercise harms us all. Severe patients - and there are so many of us - are also completely erased. It is very sad and frustrating.

Exercise harms ME/CFS patients, and has left many more disabled than they were before. Aside from that it is not relevant, because it is not a treatment for ME/CFS. The literature, despite using case definitions that fail to capture core features of the illness (PEM) and the efforts of a small group of researchers, has not shown that exercise is particularly relevant to the management of ME/CFS. A causal relationship between any patient improvement and structured exercise programmes has not been established. I hope that one of the conclusions of all of this is that we need to stop framing this whole issue around exercise once and for all.

It is politically inconvenient that there are conditions that are made worse by exercise, and that the infrastructure of "rehab" and "structured" programmes is not suitable for some patients and conditions. But it is the truth.

Overcoming this hurdle can free up much-needed time and resources which can be spent on furthering the understanding of ME/CFS both in a research and clinical context. The sooner healthcare practitioners can learn this truth, the better. It just goes to the basic understanding of what ME/CFS is. Once one understands the core features of the condition, one can understand severe patients without a lot of extra learning. PEM and sensory sensitivities can become very severe, for example. It is not a difficult concept. There must be training to counteract decades of misunderstanding and misinformation - this will be rife in any framing of ME/CFS that centres exercise as anything other than a potential severe harm.