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

It does seem likely methodologists who deal with drug interventions would understand the issues with PACE better, but I just assume they may not have quite the right experience for the review or may not be regarded as having the right experience.

I'm not that familiar with her work but based on what you've quoted it seems like she does have an almost ideological pro-exercise stance, which is concerning. And the cochrane reviews do have that inherent COI, which I wouldn't call an outright COI, but it's an unfortunate drawback. Like I sort of mentioned, to take account of the flaws in PACE, it seems like they would need to take account of things which they aren't used to looking at when doing reviews.

My judgement on Kay is based mainly on looking at her twitter. She's talked about her negative experience of being told how ME is in her head and she just needs to exercise more, and has actually recently liked some tweets from people (Keith Geraghty and Sten Helmfrid) criticising the evidence base for CBT for ME. I agree there doesn't seem to be anything to indicate she has a good understanding of research methodology or issues with GET trials. But for playing the role to represent the experience of having ME, she seems good enough, and she doesn't seem to be pro-GET or anything like that. And I also just get the impression she seems smart and fairly competent, so maybe she could pick up on and understand the issues at stake.

 

Same. It would change all of our lives. Has anyone here *not* tried this at some point in their illness? I doubt you will find many patients who have not tried gradually increasing activity.

Zooming out a bit, it is so bizarre that there is still discussion around whether or not doing the very thing that makes us ill - it's characteristic of the condition - might be good for us, actually.
There is nothing "balanced" or sensible about discussing whether exercise might treat ME/CFS. It's just a misunderstanding of the condition. I have to admit that the title of this review made me wince. It just sounds so absurd. Much of the literature uses criteria for inclusion/ outdated and incorrect case definitions that do not include PEM, and that fact cannot be emphasised enough. It's unclear how many participants even had ME/CFS. Speaking loosely of "ME/CFS" without clarity about the case definition is hopeless and harmful.

 

@Hilda Bastian just wondering if you considered asking Dr Nina Muirhead?

 

Many thanks Adam. I will let HJB know!

 

I have really appreciated your posts about this and it's really important to keep talking about it. It's something that should be easy to grasp.

 

Another point which I don't believe has been mentioned yet with regard to a patient representative who is not part of the patient community -

One of the issues I have observed in over 2 decades of having ME is that some ME patients who don't mix with others of different severity levels do not understand the different battles & difficulties they face.

For example - when I was merely moderately affected and mixed with mild to moderate patients I often heard the attitude expressed that the difference between the two groups was a lack of effort, will, gumption or the right advice.

The individuals expressing these views really struggled - some still struggling to work, albeit part time, still struggling to exercise etc. The more severe patients were sometimes viewed as people who wanted an easy answer or had simply given up. Like that campaign for natural childbirth the severe were dismissed as "too posh to push" through.

On the other hand severe patients who don't get much input from others can sometimes think of the more mildly affected who can still hold down jobs (albeit part time), exercise, carry out the day to day tasks of self care and so on as having a much easier time of it.

Neither viewpoint is true, but without interaction with the wider ME community - even if you don't take part in advocacy - then you are less likely to understand the difficulties faced by patients who are either more or less severely affected than you.

In my own case, for the first 10 years or so I was able to exercise, as long as I was very careful & sacrificed other things in order to be able to do so. While I hope I wasn't too judgemental of others, I certainly had no concept of what severe ME felt like.

As I've mentioned upthread one of the key messages impressed upon the newly ill is not to join patients groups. That the groups are militant, anti science, etc. However, not being part of the wider community means you don't have the opportunity to learn about others with different levels of function and less likely to hear the other side of the discussion on the BPS point of view.

So, in my opinion, a patient representative who is not a member of the wider ME community is less likely to question establishment points of view and less likely to understand the difficulties other patients might face.

 

Wouldn't we all.
This should be an obvious reason that exercise is futile for ME patients.

If exercise made us better we would all be doing it. Unless of course we didn't want to get better. In which case, proving that exercise can make us better is pointless, our problem is we don't want to get better.

So the question must be, will exercise make us want to get better? And if we want to get better, will we get better?

 

These points are a big concern for me. The times i hear comments such as "i dont have the choice to stay in bed i have to get up to look after my children/pay the bills" etc on places such as ME Association's facebook page. They really have no concept that those who are bed bound have no choice but to stay there - that's what 'bound' means. I once gently pointed this out to someone, and she said "my nurse tells me i have a very severe form of the disease, i had to cut down my work hours", she had absolutely zero idea that there were people who hadn't been able to sit up or turn on the light for decades regardless of the consequences.
Thats what worries me about having patient reps who arent involved in th community. Even 'mild' ME/CFS is a complete nightmare, but it's a wild fantasy to those who are very severe. And if you dont have a patient rep who understands that, then we are in very big trouble

 

I think that sadly she would be too unwell to be part of the process. Alongside working part-time and a young family, she is already working hard on research, advocacy and medical education.

However listening to some of the videos she has produced, such as the Canadian one would be really useful to improve the understanding of this IA Group, as would the Invisible Illness videos and compulsory reading of @Jonathan Edwards expert testimony to NICE.

To be honest a fair amount of Cochrane's own videos/blogs etc on stats/bias etc isn't bad. It just doesn't seem to apply to any papers on ME.

 

I would be interested to have links provided for the above mentioned videos. I did a quick google and nothing came up that was related.

 

What's all this talk about entrenched points of view? As if we're talking about a political issues? Where talking about what constitutes reliable evidence for a treatment benefit.

A question for you, @Hilda Bastian: if you read a homeopathic study of ME which reported benefits on self-reported measures within a few months after the (12 week treatment), and the study was open-label, would you accept that as evidence that homeopathy works?

If your answer is no, would any time chatting with homeopaths be likely to change your mind? I'd say it wouldn't, because you're not against homeopathy per se, you just know too much about the biases that can be introduced in open label trials. You are unlikely to change you view on this at all during the discussion. Your view is based on your understanding of bias in science.

Now would your answer be any different if the design was the same but the treatment was exercise?
If your answer is still no, then that's again because you have a strong view that blinding is important in treatment trials, and that even if a treatment can't be blinded, we cannot just ignore the problem altogether. We need find some other way to minimise these sources of bias or alternatively, asses their impact on the outcomes. If that's your view, then I expect no amount of chat with exercise therapy providers is likely to dissuade you of that opinion, its based on your understanding of science.

 

Since I joined this Forum in May, I assured people that we were working hard and making progress: because reporting was delayed didn't mean that progress and involvement of people with ME/CFS wasn't happening. The March report stated explicitly that we were engaged in establishing an IAG and author team, an address for questions was provided, and questions were answered. And I was answering questions here on this Forum, too.

After the report of 20 March 2020, the pandemic hit its stride, slowing people down generally, and pretty much everything that wasn't pandemic response. For me, trying to ensure that all this didn't end up with the review taking months longer - and those pandemic months turned into a lot of months - meant prioritizing doing what was needed to try to avoid large time over-runs. Without the enormous upheaval of a pandemic, it would have gone differently: this was a very bad time to be trying to undertake something like this. Unfortunately, that's the short straw this process drew.

The time that goes into development and feedback rounds of a substantive report, and setting aside time to respond to questions and feedback about that report when released, was a priority. However, the work on the engagement with the existing critiques and feedback, was a higher one - for the actual review work, but also as it is critical to the consultation process we will be starting. It would have been better to at least formalize as brief updates what I was communicating here and on Twitter.

It was clear the process used to establish these teams, and their members, would be criticized. Issuing a substantive report on the teams was going to require time to respond after that, and I considered allowing that time part of the task, not just its development and discussions about drafts.

Issuing brief reports that we were progressing with what we reported on in March 2020 wouldn't have satisfied what I'm hearing here: if I'm understanding correctly, that seems to be wanting to ensure there was a process more similar, for example, to that undertaken for clinical guideline committees at some major public agencies. Various recruitment options will be discussed by the IAG and in Cochrane as part of considerations and recommendations at the end of the process.