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

yes but most of it is on 'old' data not new 'research' so it could continue ad infinitum, particularly in the case of PACE trial data that still isn't available even though the MRC said it would be back in 2018
https://www.s4me.info/threads/more-pace-trial-data-released.9401/page-6#post-167893

 

It is important to note that Dr Newton recommends activity-based approaches such as graded exercise and advice on deconditioning as a first-line intervention for ME/CFS.

She recommends the Lightning Process, CBT and mindfulness (27:46 timestamp in the video below).

She has also made negative statements about patients that echo the psychiatric view of medically unexplained symptoms and malingering, but that are not supported by the evidence (30:24):

Many patients will become:

- Agorophobic/social phobic (negative peer feedback (especially teenagers)
- Trapped in negative feedback loop
- Secondary depression/anxiety
- Bed-bound = disaster!

- Often due to complicity of family; secondary gain​

@Hilda Bastian I understand that the pandemic prevented performing an in-depth review of participants for a lack of time, but unsubstantiated patient-blaming views should have precluded anyone from being considered for the author team (let alone a strong positive bias towards the intervention being reviewed).

https://www.youtube.com/watch?v=_i5OrKQsdG4

 

Completely agree with this post, as the person needs to really understand the issues as opposed to just being an arbitrary patient, however careful one is in the selection.

One would hope that everyone involved understands the problems about the case definitions and that ME/CFS is not idiopathic chronic fatigue. It's also very important to understand what PEM is and how severe it can be - but I have noticed a lack of understanding of the basics of what it is. (Delayed effect, etc). PEM is characteristic of the condition and everyone involved must understand these basics for the chance of an outcome that is not based on error and confusion.

It is vital to understand how the methodological issues interplay with the above misconceptions. Expertise and experience is crucial, because this isn't easy or obvious even to people familiar with the discussions. The interplay of methodological issues and inaccurate, inadequate conceptions of ME/CFS should really be at the heart of any serious consideration of this subject.

I am writing this post because I did not mean to suggest otherwise via the suggestion that a severe patient might be recruited - I was just very worried that the perspectives of severe patients would not be adequately heard - but of course this would not help address the above issues.

<Personal experience>
Experience with looking at literature and training is really key. Analytical skills are also important and speaking personally, they are often something one has to train for to do well. When I got very ill over a decade ago I was a graduate student and a lot of what we did was to analyze technical papers in seminars. Over and over and over again! What is this author saying? What is right with the paper? What is wrong with the paper? (Always something!) What are the key assumptions of the paper and what are the relationships with the conclusions, if any? It changed the way I approach any published literature; skills need to be honed over time and can't just materialize immediately. Practice is so important. That is why it's a shame if people who are more actively involved in analyzing this stuff are excluded. They have a key skill-set and important contextual knowledge.

I really respect everyone here so much for continuing to do this, especially given that many of us are very ill. I have learned a lot from reading the posts here. I wish others could see and read them, too!

 

Excellent - thanks! My tunnel vision had me assuming it was a PSP related to NICE from a while ago & it didn't click. So now I'm guessing you mean the James Lind Alliance? https://www.psp-me.co.uk/ Yes, they do that great, and have great resources for it. A great example for us to include when we get to that stage - thank you! Have added it to the list - if you mean another one, please let me know (no rush).

 

s

(a) Sorry - I'm not going to pre-empt the June report here. (But when you think about this, don't forget the IAG is part of the process.)

(b) And please don't consider yourself limited by me in any way in coming up with proposals for peer review - just don't ask me to commit to anything, because there will be IAG recommendations to the editors (not personal ones from me).

(c) The protocol and bypassing quality control measures: for now, the broad answer is, won't bypass me/IAG. There'll be more information on detail in the next report. (Sorry about being a broken record on this.)

 

It is extremely important to remember that assuming that Cochrane, NICE, CDC or local medical processes operate in a vacuum is incorrect. Their scope and actions are bound by the law. Full stop. It is the fundamental driver and arbitrator, unless we wish to avoid highlighting it to appease insistent law breakers and purveyors of malpractice.

The various reviews are mere details WITHIN their lawful limits. Not addressing that fact opens up waste of energy and effort, allowing discussion of possibilities that are not legally sustainable anyway. Plus, most legal advice will fail to be informed correctly and come terminally incorrect conclusions.

How this reality is referred to or plays out in different contexts has to be different, sure. But the fact remains. Neither Cochrane, NICE nor the CDC define the law. And us giving any implicit space to such thinking is us unnecessarily gifting away rights and obligations for the short to medium term. Again.

https://www.s4me.info/threads/compl...nce-underwriting-etc-vs-me.20482/#post-349054

 

All I can say is the same thing again: the group includes people with different perspectives. I understand some are opposed to that concept completely. (I did not say the pandemic prevented reviewing people in-depth.)

 

All the IAG members do not discuss their health in their bios; some do. That's here.

 

I know the Vink and Vink-Niese review is not a systematic review and doesn't claim to be. Did you consider inviting them to lead (or be part of) the Cochrane review author team to develop the new Cochrane protocol, search strategy etc. within the Cochrane process? This is what I meant by Cochranizing their work. It would be good to know if you considered it, and if you did, the reasons why it wasn't taken forward as an option.

 

Any organisation's work, output or guidelines that facilitates/creates unlawful consequences is either 1) to be ignored as a requirement of the law or 2) is itself open to legal challenge.

None of these organisations can transform unlawful decisions/acts into lawful behaviour.

Put more crudely, garbage in, unlawful behaviour out.

 

2 systematic reviewers from Cochrane Response were allocated to that work: I never considered that they weren't well-enough skilled and positioned to do it, or that it wasn't a good way to do this. I'm not going to discuss reasons for any individual not being part of the review team.

 

The Twitter thread summarises the primary points

 

Ignoring the illiterate is effectively a requirement of law in this context.

 

This causes me serious concern @Hilda Bastian.

What we need from the exercise review is the best possible judgment on whether or not a set of trials reflect some real beneficial effect specific to certain treatments. Whether or not they do have an effect is a matter of fact, even if very difficult to ascertain. I do not like the word objective, which tends to get muddled in post-modernist type language but I think in this context we can see that there is an objective fact (hard to ascertain) as to whether exercise is beneficial in ME - and various subsidiary related facts of detail. There is therefore an objective fact of the matter as to whether the trials reflect a real effect.

My understanding is that Cochrane is morally and probably legally obliged to report on the evidence entirely on the a basis of the best possible rational case for whether the trials can be taken to reliably reflect a true effect. The reliability is also an objective fact just as the reliability of the weather forecast on wind speed and precipitation is an objective fact (but easier to ascertain). The lack of reliability of open trials with subjective endpoints in identifying a real effect as also based in good evidence.

To me it would be shocking and I think a breach of human rights to allow that points of view, or sociological factors other than simply the best possible attempt to ascertain objective truth here should have any influence at all. To do so would be to admit that it was legitimate for Cochrane to favour a treatment even if the was no good evidence that it worked or to discourage a treatment even if there was evidence that it did work. There is absolutely no case for having people with 'different points of view' authoring a review.

I hope I have misunderstood what you were suggesting but it does sound tantamount to an admission that Cochrane does not follow the policy it advertises and which it is very likely bound in law to stick to.

Would anyone with an official position in Cochrane endorse the view I think is being suggested?