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

Hey @Solstice don’t feel obligated to read it all even if you feel better.

I have some stuff on so it might take me till Wednesday to finish sorting all the typos and large text blocks.

I think the background stuff I was trying to talk about is relevant to our problem of being seen as worthy for access to healthcare and how we fund finding out what this is but I didn’t include that conclusion here so may write a reply to myself including that if I can. But if not basically we’re near the sharp end of the national rich country divide and conquer tactics used to ration healthcare private and public but because this tactic is so effective, even among those effected it hard not to buy into this narrative. Collectively we’re not focused on all the others in different silos nationally and internationally that we could be in alliance with.
 
Ash said:
Hey @Solstice don’t feel obligated to read it all even if you feel better.

I have some stuff on so it might take me till Wednesday to finish sorting all the typos and large text blocks.

I think the background stuff I was trying to talk about is relevant to our problem of being seen as worthy for access to healthcare and how we fund finding out what this is but I didn’t include that conclusion here so may write a reply to myself including that if I can. But if not basically we’re near the sharp end of the national rich country divide and conquer tactics used to ration healthcare private and public but because this tactic is so effective, even among those effected it hard not to buy into this narrative. Collectively we’re not focused on all the others in different silos nationally and internationally that we could be in alliance with.
Click to expand...

Already did, I amended my previous response. Also agree with this post btw. I think one of the most effective tools to deny support is pitting patient groups against each other. "Well, we could fund this research but we'd have to cut into that research". After that you just watch people fight each other instead of fighting the assholes that are creating this situation.
 
Solstice said:
I'm gonna read the entire post at a later date as I've got a bit of PEM going on atm. The last sentence of your TLDR captures what I meant, but I agree on the rest of the bolded section too.

*edit* Read it now and I think I get the gist of it. I'd like to add that comparisons with other countries/people are always being used to belittle experiences. Yeah your ambulance didn't arrive in time to rescue both your legs, but if you'd have lived in THAT country you would've died so just count your blessings.

Well of course you're lying on your bed gasping for air, but Johnny has just lost both of his legs last week because the ambulance didn't arrive in time. So maybe you shouldn't complain?

It's often used as an excuse to let things deteriorate or to not strive to make things better.
Click to expand...

Yeah it certainly is.

But we’d be unwise I think, not to speak about this on our own terms, in favour of better outcomes for everyone.

I don’t think it’s a coincidence that those gatekeepers of our access to the essential material resources of life are choosing to have it both ways. Or to get in first. Successfully making sure such comparisons are made only on terms favourable the their agendas, ideology, and personal or political ambitions

Hoard at others expense, and then point the finger at the ‘have nots’ for daring to complain while there are ‘have nothings’ who aren’t around around to complain anymore. Or who are far away enough not to be heard. That’s a very intentional misdirection.

Why would any of us want for anything?
Why is anyone sick without care why is anyone dying of treatable conditions?
If not for those who have it all?

When any of us have M.E in a “rich country” and don’t have independent wealth as a buffer, still we are on average comparatively fortunate.

The leaders of our governments probably won’t force us -through threat of starvation- down a mine full of poisonous gas, or murder us -via the dept repayment they demand of the countries they extort cheap labour and raw materials from- by destabilising our economy and destroying chances of a functioning healthcare system.

But the ‘have it alls’ are still gonna let us starve to death because they won’t pay social security. They are still gonna incite hate crimes against us. Still gonna make sure everyone “productive”, “hardworking” and “motivated” will shun us. Since most people like to think of themselves this way, that means most people.

They will force us into humiliating self exposure, make us beg for what we need to live to live on. Then leave people with nothing. Cause those who can’t live up the economic plan to despair and die. They are also still gonna directly cause the the deaths of people with ME via a hostile hospital and medical system.

So the difference is an average, in terms of how difficult it is to survive disabled in different countries. It’s easier for lower income people on average in “a rich country” to get the basics for life.

But your life is still gonna be so lonely and harsh due to all the resentment and suspicion of disabled people that is ingrained in the rich countries culture, dependent as they on exploitation, built on it. In the end you might not even wanna fight. You might not be able to maintain your own sense of worth while you’re being told you’re worth nothing.

There is no reason why any of us has to suffer in any of these ways. Except that certain institutions are making sure that we do.

We are a horrible warning to the worker about what happens if you don’t manage somehow to fit your roll.

Got sick and injured at work? Too bad. You will be judged as less than from here on.

All of us are safe or none of us are. If we get into the good books on account of one diagnosis those with the power to help just gonna double down on it not being “cost effective” to treat or put the “focus on prevention”, in this case that won’t mean helping you stay well, but more focus on what you did wrong to become unwell, “individual responsibility”
And on and on forever reinforcing the system.

Whether or not they know it, those maintaining official documents of any kind that are used to place the focus on individual patient behaviour instead of on the healthcare provision obligation for private and public providers, are backing the same system that keeps people poor and sick, and protects the assets and wealth of the richest individuals.
 
Last edited:
Solstice said:
I'm gonna read the entire post at a later date as I've got a bit of PEM going on atm. The last sentence of your TLDR captures what I meant, but I agree on the rest of the bolded section too.

*edit* Read it now and I think I get the gist of it. I'd like to add that comparisons with other countries/people are always being used to belittle experiences. Yeah your ambulance didn't arrive in time to rescue both your legs, but if you'd have lived in THAT country you would've died so just count your blessings.

Well of course you're lying on your bed gasping for air, but Johnny has just lost both of his legs last week because the ambulance didn't arrive in time. So maybe you shouldn't complain?

It's often used as an excuse to let things deteriorate or to not strive to make things better.
Click to expand...

I've had this logic used on me almost my entire life. Childhood diseases have visible signs and symptoms so couldn't be ignored or disbelieved. But once I reached puberty almost all my health problems became internal ones which rarely came with fevers that showed up on a thermometer. So I was assumed to be lazy and avoiding school, university, work, housework, working in the garden. When I did something good it was never good enough. And when I was sick and in pain that was assumed to be never real or never as bad as I said it was. I think constant disbelief is one of the most cruel parts of being ill.
 
CRG said:
There are specified exemptions in the Act: Part II Exempt information

My guess is that in this case the Charity Commission (CC) is relying on Section 36 for an explanation of which:

"The section 36 exemption applies only to information that falls outside the scope of section 35. It applies where complying with the request would prejudice or would be likely to prejudice “the effective conduct of public affairs”. This includes, but is not limited to, situations where disclosure would inhibit free and frank advice and discussion.

Section 36 differs from all other prejudice exemptions in that the judgement about prejudice must be made by the legally authorised qualified person for that public authority. A list of qualified people is given in the Act, and others may have been designated. If you have not obtained the qualified person’s opinion, then you cannot rely on this exemption. The qualified person’s opinion must also be a “reasonable” opinion, and the Information Commissioner may decide that the section 36 exemption has not been properly applied if they find that the opinion given isn’t reasonable.

In most cases, section 36 is a qualified exemption. This means that even if the qualified person considers that disclosure would cause harm, or would be likely to cause harm, you must still consider the public interest. However, for information held by the House of Commons or the House of Lords, section 36 is an absolute exemption so you do not need to apply the public interest test.

For further information, read our more detailed guidance: https://ico.org.uk/for-organisation...e-to-the-effective-conduct-of-public-affairs/ "

The CC will have wide discretion on applying Section 36 to any communication it has with Charities because the CC has a dual role, it is both a regulator and a support agency for registered Charities and as such it can claim that many of its communications with Charities need to be confidentional, a key part of the Act says:

36 (2) Information to which this section applies is exempt information if, in the reasonable opinion of a qualified person, disclosure of the information under this Act—

(b)would, or would be likely to, inhibit—

(i)the free and frank provision of advice, or

(ii)the free and frank exchange of views for the purposes of deliberation, or

(c)would otherwise prejudice, or would be likely otherwise to prejudice, the effective conduct of public affairs.
Click to expand...

Excellent analysis @CRG
I expect the first tier appeal (internal review by the organisation) will be knocked back/fail. However, the second tier is to the Information Commission (external) and I'd be interested to see their decision re disclosure. My "understanding" of "free and frank--" is that the intention is to allow (integral) consideration of a range of options [A to Z]; however, when a decision is made [e.g. "Z"] then the reasons that option was chosen are not protected from disclosure - except via another exception e.g. "legal advice".
 
It's interesting to read what was planned for the new review and consider how it all went so wrong. Including how Cochrane now seem to be saying 'it's not our review process'.

Stakeholder engagement in high-profile reviews pilot

Exercise therapy for chronic fatigue syndrome. This webpage provides information and regular updates on the progress of the pilot and the update of the Cochrane review.

Progress reports:

(There will be a combined August/September progress report with the launch of the first IAG consultation)

Frequently asked questions (FAQs) about the update of the Cochrane review on ‘Exercise therapy for chronic fatigue syndrome’
FAQs last updated 30 June 2021

Why is the review being updated and how long will it take?
Cochrane reviews can be updated because a review’s methods or included evidence may be out of date, or in response to concerns. This review is being updated for all those reasons.

Cochrane’s Editor in Chief, Karla Soares-Weiser, considered the range of concerns expressed about this review and concluded the review needs a patient-focused, contemporary perspective on exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The current review approaches the issue with a research question and a set of methods from the early 2000s, reflecting evidence from studies that applied definitions of ME/CFS from the 1990s. In addition, the results of any relevant studies available after May 2014 are not included.

The complete updating process for the review is expected to be complete early in 2022. We will be reporting on progress monthly.

More on this: Cochrane’s statement announcing the amendment and planned update process.

Why was the Cochrane review amended in October 2019?
The amendment aimed to address some of the concerns raised about the review in the short term, pending the lengthier process of a complete update.

The changes to the review related to the limited applicability of the evidence given the definitions of ME/CFS in the studies, long-term effects on fatigue, and limited assessment of potential harms.

More on this: Cochrane’s statement announcing the amendment and planned update process.

Is the review update being done by the authors and editorial review group of the current review?
No. The author team of the current review have stepped down. The editorial "home" of the review is now the Cochrane Musculoskeletal, Oral, Skin and Sensory Network (MOSS) Network, in collaboration with the Cochrane Pain, Palliative and Supportive Care (PaPaS) group. You can read more about this and the new author team here.

The biographies and declarations of the author team are here.

Why is there an Independent Advisory Group?
The goals of the Independent Advisory Group (IAG) are to:

  • ensure and facilitate responsiveness to stakeholders' concerns; and
  • improve the relevance, accessibility, and credibility of the revised and updated review.
The involvement of representatives of advocacy groups for people living with ME/CFS from different parts of the world is intended to help ensure a patient-focused perspective on the review’s questions.

The lead for the IAG, Hilda Bastian, was chosen by the Cochrane Editor in Chief. Hilda has been a health consumer advocate and researcher, and has held many roles with healthcare bodies. She was chosen for the broad support seen for her writing on the specific concerns of people with ME/CFS related to this review, as well as her understanding of the methodology of systematic reviews.

You can see the biographies and declarations of interests of the IAG members here and read about how they were chosen here.

The IAG will be supported by Cochrane staff, in particular:

  • Rachel Marshall, Editorial Lead at the Cochrane Editorial and Methods Department, who is the update’s project manager; and
  • Richard Morley, Cochrane’s Consumer Engagement Officer.
More on the background: announcement of the appointment of the lead for the IAG

More on Cochrane’s position on consumer involvement: The statement of principles for consumer involvement in Cochrane

Will there be ways for the views of people other than members of the IAG to be heard?
Yes. Cochrane has a commenting function that can be used to submit comments on the updated protocol and review when they are published. The protocol will set out, in detail, the proposed scope and methods for conducting the review. The drafts of both the new protocol and the updated review will be peer reviewed before publication. A draft protocol will also be available for a brief public consultation period, which is anticipated to be in the third quarter of 2021.

People can communicate directly with the IAG via the email address, Cochrane.IAG@gmail.com. The email account is not monitored by members of Cochrane’s staff. When the IAG finishes its work, the contents of the account will be archived at Cochrane.

In addition to the IAG itself, the IAG lead will convene an email discussion group for groups representing people living with ME/CFS. The IAG lead, in consultation with other participants, will also develop other opportunities for stakeholder engagement.

What will the IAG do?
The IAG will advise the authors of the review. It is anticipated that the IAG will be:

  • Advising on the language used to describe ME/CFS;
  • Advising on key issues for the review’s new protocol;
  • Reviewing and providing an IAG response to the drafts of the protocol and review;
  • Suggesting peer reviewers;
  • Reviewing the revisions made by the author team following peer review;
  • Considering issues raised by peer reviewers, stakeholder groups, and other readers about the protocol, the process for updating the review, and the review.
The IAG will shape its own role, consider gaps in its membership, and determine communication processes and confidentiality in the update of the review. Meetings will be conducted by teleconference and most communication will likely be over email.

The IAG lead will recruit members in liaison with the Cochrane project manager, and is the IAG’s spokesperson. She will facilitate its discussions and chair its meetings, and coordinate its responses to the authors. The IAG lead will also convene an advocacy group email discussion group and other means of stakeholder engagement. She has been offered an honorarium.

What happens if the IAG and the review authors do not agree on an issue?
If that happens, the Cochrane Editor in Chief will have final decision-making responsibility.

Where can we get updates and answers to other questions?
General enquiries or feedback about the update of this review will be referred to the IAG for response.

Archive of previous versions of this webpage:
Click to expand...

The message was that the 2019 review was not fit for purpose, and a new review would be in place by early 2022, with a draft protocol in 2021.
Cochrane reviews can be updated because a review’s methods or included evidence may be out of date, or in response to concerns. This review is being updated for all those reasons.
Click to expand...
There was to be monthly updates.


I note that one of the two roles of the IAG to "ensure and facilitate responsiveness to stakeholders' concerns".

I also note that Cochrane was paying Hilda to be the IAG lead. And, if the IAG and the writing group didn't agree, the Cochrane Editor was to have final decision-making responsibility. That doesn't sound like the implied 'we have nothing to do with the new review' message that we are hearing from Cochrane now.

So, I think when responding to Cochrane's claim that the 2019 review has been thoroughly considered and the matter is closed, a point is that everyone thought that a new review would be there to replace it in 2022. The ME/CFS community on the whole accepted that and was patient. But, we are nearly in 2024, and there is still no sign of even a protocol. And, the flawed review continues to cause harm.

Also, Cochrane has been unable to meet the promises it made to the ME/CFS community, so there is no basis for trust that the new process will ever be completed or will produce a review properly reflects the flaws in the underlying trials.

And, since 2019, we have had the NICE examination of the evidence. And we've had the Covid-19 pandemic with the enormous increase in cases of ME/CFS, making it all the more important to ensure that evidence-based information is in the public domain and misleading information is immediately removed. Things have changed. The process that seemed tolerable in 2019 is definitely not now.
 
Last edited by a moderator:
I agree with all that, Hutan, the trouble is, we've said all that already in our letters and it seems they haven't bothered to read them. They are simply passing the buck to the IAG. I think if we say it all again, they will simply forward the emails to the IAG mail without reading them.
 
Is Cochrane subject to freedom of information? Would the UK freedom of information laws apply in this situation or the Swedish?

Given the latest communication from Cochrane seems to contradict previous communications and on line information about this process would it be appropriate to start a freedom of information request relating to these inconsistencies, for example:

1. What are Cochrane’s processes in relation to assessing serious methodological problems in published reviews and harms arising from misinformation in published reviews? How is any decision to withdraw a published review made?
2. What was the decision process in leading to no longer having an update project manager?
3. What was the brief given to the IAG when it was established, how was its structure established, why were update ceased and what is its current structure?
4. Does the IAG have any role in advising on the status of the current 2019 flawed review and does it have any role in evaluating the previous conduct and processes relating to complaints and concerns about the 2019 review, given Cochrane have previous deflected any response on people’s concerns saying that these issues are to be dealt with by the IAG?
5. What was the thorough editorial scrutiny referred to in the recent email to ourselves used to justify not responding to any of our concerns? If this editorial scrutiny was in relation to the publication of the 2019 update, how did Cochrane decide that all the concerns raised since by various people/groups including ourselves could be disregarded?
6. etc
 
Sadly, I think a lot of Cochrane's operations are beyond the reach of FOI requests.

Trish said:
I agree with all that, Hutan, the trouble is, we've said all that already in our letters and it seems they haven't bothered to read them. They are simply passing the buck to the IAG. I think if we say it all again, they will simply forward the emails to the IAG mail without reading them.
Click to expand...
Yes, simply informing people in Cochrane of what to us is an appalling situation, even when bolstered by nearly 50 ME/CFS organisations saying 'this really is a problem', does not seem to be getting us very far at all. They really just don't seem to care. Whatever it is that is keeping that 2019 review in place, whether it is access to funding or just simply an incredibly bad quality assurance structure, compounded by prejudice about people with ME/CFS and too many other crises within the organisation that are demanding attention, it seems pretty immoveable.

I was thinking about this this morning. We may need to try some different approaches - I'm not sure what.

We really need to hear from the ME/CFS representatives in the IAG - e.g. why they think allowing Cochrane to point to a process that is extremely unlikely to have a satisfactory ending in any timely way is something they continue to facilitate. From here, given the broken promises and the winding back of responsibility on the part of Cochrane, it looks as though Cochrane is fine with the ME/CFS reps losing credibility to ensure the window-dressing stays place. It really is a very odd situation.

@Medfeb, @hope123, @Penelope McMillan
 
Hutan said:
Sadly, I think a lot of Cochrane's operations are beyond the reach of FOI requests.


Yes, simply informing people in Cochrane of what to us is an appalling situation, even when bolstered by nearly 50 ME/CFS organisations saying 'this really is a problem', does not seem to be getting us very far at all. They really just don't seem to care. Whatever it is that is keeping that 2019 review in place, whether it is access to funding or just simply an incredibly bad quality assurance structure, compounded by prejudice about people with ME/CFS and too many other crises within the organisation that are demanding attention, it seems pretty immoveable.

I was thinking about this this morning. We may need to try some different approaches - I'm not sure what.

We really need to hear from the ME/CFS representatives in the IAG - e.g. why they think allowing Cochrane to point to a process that is extremely unlikely to have a satisfactory ending in any timely way is something they continue to facilitate. From here, given the broken promises and the winding back of responsibility on the part of Cochrane, it looks as though Cochrane is fine with the ME/CFS reps losing credibility to ensure the window-dressing stays place. It really is a very odd situation.

@Medfeb, @hope123, @Penelope McMillan
Click to expand...


Out of curiosity With the FOI email trail from Atle and Karla what were the institutions/unis involved who were pushing for the independent arbitrator Guyatt’s wirding and confirmation of ‘only an affect if you not with no significance and vice versa’ to be cut to read differently etc?

are there any connections to Soares-Werner and the new Cochrane move to a Swedish uni and was that to do with their losing British or other funding and when did that happen etc?


No wonder they keep wanting to point onlookers to an entirely different report so they don’t look too hard at all this is what I think - it’s all very ‘look at the big aeroplane’

and PS I really do feel for the IAG I think the fact they are getting stitched up as a contact point despite never having worked on the report in question and that they can’t even reply saying ‘all that was done snd dusted three years before my time and I’ve no power or right to look into due process on anything or withdraw bad reports etc so goodness knows why they pointed for you to contact me’ says they might well be stitched up with something gagging them from replying but who knows.

A group for a different report who apparently are there for communication but might be banned or scared or have clauses preventing them from saying ‘nothing to do with me’ being pointed to isn’t a mistake it feels and so I do really feel for them if this has been strategically thought-through to land them in that situation etc
 
Last edited:
dratalanta said:
Cochrane aren’t beyond a subject access request. There are several individuals (including commenters above) about whom Cochrane staff might have committed some choice nuggets to email.
Click to expand...
I had no idea what a subject access request is, so I looked it up;
Why make a subject access request?
You can make a subject access request to find out:

  • what personal information an organisation holds about you;
  • how they are using it;
  • who they are sharing it with; and
  • where they got your data from.
Click to expand...

I can't see what personal info about any of us would be of interest to Cochrane and they might hold.
 
Hoopoe said:
A way to put some pressure on Cochrane is to speak with its funders about the guideline and contemptuous behaviour of Cochrane towards patients.
Click to expand...

I've been thinking about who we're talking too in a lot of instances. In NL we have the Rosmalen/ZonMw debacle, but nobody is talking about how the university hospital of Groningen is making a mess of things by having her run things. I think certain people are beyond shame and others operate shady or from the shadows. You mail Cochrane and you get a nothing-burger back signed by Cochrane the organization without someone putting their name to it. You complain about Rosmalen and she's just gonna shrug, if it hasn't bothered her for the past 10/20 years, why would it now.

The universities etc. hosting and in some places funding these people might be otherwise inclined.
 
Hoopoe said:
A way to put some pressure on Cochrane is to speak with its funders about the guideline and contemptuous behaviour of Cochrane towards patients.
Click to expand...
It's possible that some of this has already happened, with the UK NIHR seeming to have stepped back a bit.

I think I read somewhere, either directly or between the lines, in Cochrane's online material that their big announcement of 'patient-centred' stuff back in 2021 was in response to demands from funders. Some of those funders might be interested to hear how it worked out...

This is the central organisation funding - 13 million GBP in 2020. I expect some of these organisations contribute much more to Cochrane branches. Definitely, I think there is scope for contacting the funders. There are lots of organisations, including WHO, that could be worth writing to, especially after the mask debacle. Interesting to see the considerable Danish sponsorship.
More than 1 million GBP
National Institute for Health Research (UK)
Danish Health Authorities (Denmark)

500k to 1 million GBP
Federal Ministry of Health (Germany)
National Health and Medical Research Council (Australia)
National Institutes of Health (USA)
Health Research Board (Ireland) / Public Health Agency, Health and Social Care Research and Development (Northern Ireland)
South African Medical Research Council (South Africa)
Cochrane Charity (central funds awarded within the collaboration)
World Health Organization

100k to 500k GBP
Foreign, Commonwealth and Development Office (UK)
Direction générale de l’offre de soins (France)
Ministry of Health, Social Services and Equality (Spain)
Chief Scientist Office (Scotland)
Ministry of Health (New Zealand)
Ministry of Health, British Columbia (Canada)
McMaster University (Canada)
Norwegian Agency for Development Cooperation (Norway)
Health and Social Fund, Lower Austria (Austria)
Amsterdam University Medical Center (Netherlands)
Institut National du Cancer (France)
Ministry of Health (Austria)

50k to 100k GBP
Zorginstituut (Netherlands)
Ministry of Health (Brazil)
Public Health England - Delivering Better Oral Health
Government of Brazil
Swiss Medical Board (Switzerland)
Vermont Oxford Network (USA)
European Commission
Department of Health (South Africa)
National Research Foundation (South Africa)
Federal Ministry of Education and Research (South Africa)
Canada Research Chair Critical Care Neurology and Trauma (Canada)
Skåne University Hospital (Sweden)

20k to 50k GBP
Ministry of Health and Welfare (Taiwan)
American Heart Association (USA)
Liverpool School of Tropical Medicine (UK)
Laura & John Arnold Foundation (USA)
Lund University (Sweden)
Canadian Institutes of Health Research (Canada)
Gerber Foundation (USA)
CIBER de Epidemiología y Salud Pública (Spain)
Cochrane Oral Health Global Alliance
University of Ottawa (Canada)
Cochrane Japan
University of Auckland (New Zealand)
Odense University Hospital (Denmark)
Canadian Rheumatology Association (Canada)
Società Italiana di Cure Palliative (Italy)
Cochrane UK
Health Authority, Umbria Region (Italy)
State of Lower Austria (Austria)
Faculdade de Medicina de Lisboa (Portugal)
European Academy for Neurology
University of Pécs (Hungary)

10k to 20k GBP
Royal Society Te Apārangi (New Zealand)
Lower Austrian Health and Social Fund (Austria)
Singapore Clinical Research Institute (SCRI)
Associazione Italiana Dislessia (Italy)
Netherlands Trial Register (Netherlands)
Population Health Research Institute (Canada)
Stichting Collège Européen de Médecine physique et de Réadaptation
Bundesamt für Gesundheit (Switzerland)
Kazan Federal University (Russia)
National Institute for Health and Care Excellence (UK)
Canadian Association of Gastroenterology (Canada)
Centre Hospitalier Universitaire de Québec-Université Laval (Canada)
Istituto Superiore di Sanità (Italy)
Safer Care Victoria (Australia)
American College of Gastroenterology (USA)
Tees, Esk and Wear Valleys NHS Foundation Trust (UK)
Department of Health (Australia)
International Parkinson and Movement Disorder Society
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom