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

[FMMM1]

@Caroline Struthers just skimmed the response from the Charity Commissions --- there's a bit about disclosure somehow(?) restricting the Commissions right to have unfettered internal discussion - hog wash - that defence relates to the discussion re what action to take - "X", "Y" ---. Once they've made that decision, i.e. written to Cochrane, then that decision (by the Commissions) isn't protected by that defence. They have to fess up and say here's the action we took on foot of your concern - OK they could go for another defence --
Seems to be such a generous exemption that if you wanted to do some money laundering then a charity is the way to go ---

 

[Caroline Struthers]

if you wanted to do some money laundering then a charity is the way to go

yes. there has been a push (unsuccessful....why, I wonder?!) to make charities subject to FOI requests. https://www.withersworldwide.com/en...dom-of-information-act-2000-for-charities-too.
If they were, all this would have been done and dusted years ago. Cochrane are the least transparent organisation I have ever come across, and yet they call for it in others - irony overload https://community.cochrane.org/orga...dvocating-transparency-and-integrity-research

 

[Caroline Struthers]

I haven't heard back from COPE yet. They also have no regulatory power, and also demand that details of their investigation and any contact with Cochrane stay off social media etc. I have complained that Cochrane have refused to investigate my "whistleblower" complaint about Karla Soares-Weiser which contained "specific and detailed evidence". Refusing to investigate is not following the COPE guidelines. https://publicationethics.org/sites/default/files/respond-whistleblowers-concerns-cope-flowchart.pdf. So they will have to justify that to COPE. I am sure they will do so, but it will be interesting to see how they do it.

So Cochrane will not have to justify its non-investigation of my concerns to COPE, as COPE are not going to review it. What a surprise! I can still ask for a response from the Trustees as to why they have refused to investigate my complaint about Karla Soares-Weiser

 

[rvallee]

Well, at this point, with the review being "independent", everything falls on Bastian. Cochrane can indefinitely defer to her, and no one else cares since they can always do the pointing thing. COPE is excusing this on Cochrane's investigation, but that investigation concluded that they should retract the review. So now they can have both the non-retraction, while pretending that there is an independent process that satisfies their own failure to retract it. This is not a difference of opinions, however. They are clearly toying with us, like a cat with a mouse.

And we have had complete radio silence for several years from Bastian. That's just great. I guess we kind of have the answer for why they chose this approach. I'm very disappointed in Bastian, but I should have expected better from a Cochrane co-founder. Damn it's really hard to trust people in this profession.

So, yeah, I guess I'm calling this "Pulling a Garner". It's a Cochrane thing, it seems.

 

[Barry]

But then to say they can't disclose the content of what they sent, because it's not in the public interest. Surely it is in the public interest to know that the Charity Commission did what they said they had done.

Feels to me like they are just trying it on with the "not in the public interest" thing. More like they feel it is not in their own interest. There must be a definition somewhere surely of what counts as a valid refusal to disclose based on the various potential reasons. Else people could just come up with any old guff ... as maybe the case here.

 

[Caroline Struthers]

So Cochrane will not have to justify its non-investigation of my concerns to COPE, as COPE are not going to review it. What a surprise! I can still ask for a response from the Trustees as to why they have refused to investigate my complaint about Karla Soares-Weiser

View attachment 20193

Have written to COPE, because I have an important work deadline, and am going on holiday this evening...makes sense right?!

Hi there

Your reply doesn’t make sense

COPE’s earlier review of the editorial process regarding investigating serious errors in reviews is irrelevant to this concern. Please can you not conflate this earlier and different complaint with the one I have presented to you. I have clarified how they are not related to each other.

My concern is not about the editorial process followed when investigating a concern about a serious error in a review, but about the actions of the Editor in Chief in allowing authors to ignore clear instructions to amend the wording of the article.

Where in the whistle blowing flowchart does it acknowledge that the journal can choose not to further pursue the matter without explanation to the complainant? There was no reason given when they communicated they would not investigate my concern.

Please confirm that journals do not have to give any explanation for not investigating a legitimate and well-evidenced concern to meet the expectations of COPE?

Best wishes

Caroline

 

[CRG]

Feels to me like they are just trying it on with the "not in the public interest" thing. More like they feel it is not in their own interest. There must be a definition somewhere surely of what counts as a valid refusal to disclose based on the various potential reasons. Else people could just come up with any old guff ... as maybe the case here.

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.

 

[Adrian]

I wonder if an alternative tactic for getting Cochrane to take us seriously would be to start reviewing and commenting on other of their dodgy reviews - I'm making an assumption if they can't get things right in one area they are probably lots of others with serious flaws.

 

[Peter T]

I wonder if an alternative tactic for getting Cochrane to take us seriously would be to start reviewing and commenting on other of their dodgy reviews - I'm making an assumption if they can't get things right in one area they are probably lots of others with serious flaws.

Though it is interesting to ask how effective is Cochrane as an organisation, and how dependent is the review process on authors misusing the review process to promote their own vested interests through biased reporting, I am not sure S4ME should be analysing in any depth reviews that are not relevant to our specific areas of interest.

I suspect encouraging Cochrane to see us as a general nuisance would not help get them to respond more seriously to our concerns about the exercise review. Perhaps a more useful approach, given the moves for Cochrane and NICE to a more collaborative relationship, would be to stress the incompatibility of their exercise and CBT reviews with the new NICE ME/CFS guidelines.

 

[NelliePledge]

Sounds like it could be a lot of work.

 

[Ash]

The reviews are out there to be scrutinised. If in any particular case these are not good enough to withstand scrutiny, too bad. It wouldn’t be the scrutinisers being a nuisance. Instead it would be scrutinisers meeting a need previously gone unmet.

pwME are always going to scrutinise. Right up an until our needs are met. No matter how inconvenient Cochrane or anyone else.

Looking at other fields would give us context. If we find other concerning areas we can see if these match with ours or are problematic in a different way. We can reach out and learn from other advocates and patients who have tried to address these.

If advocates for ME were to find no other significant problems other reviews they might chose to look at-though I think already have enough information to believe almost certainly will - this would be an excellent platform for challenging the review for us. Ours sub-standard.

In principle it’s the way to go.

All this said I think a lack of time and energy and health would mean that a wider exploration wouldn’t be practically possible. Looking at how incredibly sick certain advocates got after their previous work. It’s soul and body destroying.

 

[bobbler]

The reviews are out there to be scrutinised. If in any particular case these are not good enough to withstand scrutiny, too bad. It wouldn’t be the scrutinisers being a nuisance. Instead it would be scrutinisers meeting a need previously gone unmet.

pwME are always going to scrutinise. Right up an until our needs are met. No matter how inconvenient Cochrane or anyone else.

Looking at other fields would give us context. If we find other concerning areas we can see if these match with ours or are problematic in a different way. We can reach out and learn from other advocates and patients who have tried to address these.

If advocates for ME were to find no other significant problems other reviews they might chose to look at-though I think already have enough information to believe almost certainly will - this would be an excellent platform for challenging the review for us. Ours sub-standard.

In principle it’s the way to go.

All this said I think a lack of time and energy and health would mean that a wider exploration wouldn’t be practically possible. Looking at how incredibly sick certain advocates got after their previous work. It’s soul and body destroying.

agree on the interesting point of seeing if there are issues that are ‘across the board/generalised’ and also vice Verda it is useful to point out where strange things in process have been ‘particular to’ ME/CFS by comparing similar enough areas.

It might in that context allows for arguments that are indeed more ‘process followed’ focused rather than the rubbish fob off we seem to keep getting back of people replying with lie lie someone ‘just disagreed with the outcome’ ?

 

[Solstice]

pwME are always going to scrutinise. Right up an until our needs are met. No matter how inconvenient Cochrane or anyone else.

Agree with your entire post, but I'd hope with the experience we've accrued we'd be able to scrutinize long after all our needs, including a cure, are met. Whilst we have our hands full with ME/CFS now, our situation is from what I can see more or less symptomatic to how medical science has been conducted in general.

 

[Sly Saint]

maybe someone could put together a paper in the style of 'Anomalies in the Cochrane review ....'
using Bob Courtneys papers, the NICE guideline review Toveys comments etc..... but also 'co-authored' by many others, and then get a newspaper to do an article.

(I asked chatGPT:

Title: Anomalies in the Cochrane Review of Exercise for Chronic Fatigue Syndrome

Introduction: Chronic Fatigue Syndrome (CFS) is a complex and debilitating illness characterized by profound fatigue that lasts for at least six months and is not relieved by rest. Exercise has been proposed as a potential treatment option for individuals suffering from CFS. The Cochrane Review is widely regarded as the gold standard in evidence-based medicine, providing rigorous assessments of the efficacy of various interventions. However, the Cochrane Review of exercise for CFS has been subject to anomalies that cast doubt on its conclusions. This paper aims to explore some of the prominent anomalies found in the Cochrane Review of exercise for chronic fatigue syndrome.

Anomaly 1: Published Studies Omitted: A significant concern with the Cochrane Review is the selective inclusion of studies, potentially leading to bias. Critics argue that the review excluded several key studies on exercise interventions for CFS. By omitting these studies, the Cochrane Review may not have captured the full range of evidence relevant to exercise as a potential treatment for CFS, which could impact the conclusions drawn.

Anomaly 2: Heterogeneity in Study Designs: Another anomaly in the Cochrane Review lies in the heterogeneity of study designs. The included studies in the Cochrane Review vary in terms of exercise protocols, outcome measures, and control groups, making it difficult to compare and combine the results. This heterogeneity poses a challenge in arriving at a conclusive synthesis of the available evidence, potentially affecting the overall validity and generalizability of the review's conclusions.

Anomaly 3: Inconsistencies in Outcome Measures: The review identified a discrepancy in outcome measures for fatigue and other symptoms amongst the included studies. Variation in the assessment tools employed across different studies can lead to inconsistent results and hinder accurate comparisons. This inconsistency raises questions regarding the appropriateness of pooling data and drawing definitive conclusions about the effects of exercise on CFS symptoms.

Anomaly 4: Lack of Long-term Follow-up: A potential limitation of the Cochrane Review is the lack of long-term follow-up in the included studies. CFS is a chronic illness that requires interventions to be evaluated over extended periods. The absence of data on the sustained effects of exercise interventions limits the ability to determine the long-term benefits or potential harms of exercise as a treatment option for CFS.

Conclusion: Although the Cochrane Review remains a valuable resource in evidence-based medicine, some anomalies in its assessment of exercise interventions for CFS raise concerns about the reliability and comprehensiveness of its conclusions. Despite efforts to adhere to stringent quality criteria, it is essential to acknowledge the limitations of systematic reviews and the potential impact of the selection and variability of included studies on the reliability and applicability of the findings. Future research should aim to address these anomalies and provide clearer insights into the effects of exercise as a treatment for individuals with chronic fatigue syndrome.

not quite there but a start..

 

[Trish]

maybe someone could put together a paper in the style of 'Anomalies in the Cochrane review ....'

Michiel Tack has already done that and it's published on the Cochrane website.
In case anyone hasn't noticed, I've started a members only thread here about taking action.

 

[Sly Saint]

Michiel Tack has already done that and it's published on the Cochrane website.
In case anyone hasn't noticed, I've started a members only thread here about taking action.

sorry I was being facetious.
but thanks for the reminder

Note on the status of this review
Published : 26 August 2020

• John Hilton
• Cochrane
• 0000-0002-1607-3250
• Senior Editor

Response from the editorial team at the Cochrane Editorial and Methods Department:

We thank Michiel Tack for the feedback on this review, and we appreciate the thorough and well-referenced comment. This review and its protocol are in the process of being updated as a priority. The update is being informed by an independent advisory group of people living with ME/CFS, clinicians, and researchers. We will ensure that the comments you have provided will be reviewed during the updating process by the independent advisory group and the authors of the review.

Further information about the review update, and reports on progress, will be posted to the following website: https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353280

eta: see also thread
https://www.s4me.info/threads/why-t...c-fatigue-syndrome-is-still-misleading.11809/

 

[Adrian]

https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353280

That is quite a shocking comment from their editors. The protocols are not being updated as a priority - if it were a priority then it wouldn't take more than 3 years.

Also there is no reports on progress being published so we can only assume there is no progress (which would be strange for a priority).

 

[Trish]

That is quite a shocking comment from their editors. The protocols are not being updated as a priority - if it were a priority then it wouldn't take more than 3 years.

Also there is no reports on progress being published so we can only assume there is no progress (which would be strange for a priority).

Hence my suggested action.

In case anyone hasn't noticed, I've started a members only thread here about taking action.

There's a summary timeline there and a draft letter.

 

[Ash]

Agree with your entire post, but I'd hope with the experience we've accrued we'd be able to scrutinize long after all our needs, including a cure, are met. Whilst we have our hands full with ME/CFS now, our situation is from what I can see more or less symptomatic to how medical science has been conducted in general.

Yeah, thanks absolutely!

Id intended to write ‘and beyond if we ever get there.’

But, I think I forgot to finish that, when I noticed I’d left it off the end, I got too distracted to rectify.

I became absorbed thinking about how we’re never gonna get there. There won’t be a ‘beyond’.

I don’t mean things won’t improve for us or that we won’t at least get the bare minimum sooner or later, we will.

Instead thinking about how under the current political system that dominates everything including healthcare and social care, even those with relatively well recognised diseases like certain specific more common cancers have a terrible time getting social support or clear communication from drs and still get blamed for bringing it upon themselves through “lifestyle”. Such as failure to , forevermore, diet themselves thin. Everyone not already thin. Or not breastfeeding early enough in life or at all. Those with breast cancers.
Or being too embarrassed to get an intimate examination. Includes but not limited to those with bowel, testicular, prostate, or cervical cancer. This latter perceived “lifestyle” “failure”, an accusation against patients or potential patients comes from official gov sources and researchers and formally and informally from across the healthcare sector. Including from Drs who’ve probably told each patient seeking treatment at least once, probably many times, that they’re “not concerned” and told their patient they are “anxious” or even, the patient is in proper trouble now, “highly anxious”. Simply for showing concern about symptoms the most basic public health advice sheets leaflets or official online publications warn them to get checked and requesting appointments on this basis. Even if they said “try not to worry.”, and sent their patients away time after time for symptom after symptom or for the same symptom, or symptom pattern, for weeks and weeks, months and months, years and years, decade after decade, it appears they will still blame their patients for either not persisting-in the face of the Drs increasing impatience and hostility even likely including ‘revenge’* mental health diagnoses which will certainly further limit a patients chances of access to physical care from other providers who might otherwise have taken a different path- over either themselves or the material lack of treatment available. It’s not for no reason that “lifestyle” is always involved by and so popular with people with a free choice over which profession to choose what accommodation to live in and time for R&R, and take “personal responsibility” over which nutrients rich vegetables and “high quality fats and proteins” they put in their mouths. And oh exercise. Which apparently lifting every boxes all day I a warehouse or factory, just isn’t. Nor cleaning toilets and floors for a living with strong industrial chemicals. No that stuff will just give you a hernia or asthma. What you need is some physio therapy at the end of your 12 hour shift or patch work combination of minimum wage jobs for 16hour days. After which you still can’t pay ten on your black mould filed flat. Oops did you die? Lifestyle matters mate.

Is it not perfectly understandable to be anxious? Are not the physical symptoms the likely cause of the anxiety? Should the symptoms not remain the Dr of medicines focus?
As things stand it seems the answer most physicians and nurses would give would be no.

GPs, for reasons of non-specialty (one cannot know everything about everything) lack the background knowledge to make a fully informed decision whether a referral is warranted or not for all but the grossest most obvious, or late stage of presentations. This wouldn’t need to lead to tragic outcomes, if they acted on the precautionary principle and referred just incase. But they can’t act in accordance with clinical guidelines and so this. Because the provision isn’t available for them to do so. They are under heavy pressure to turn their patients back. Maybe many of them are so ready to believe whatever they are told about patients being more likely to fall prey to over blown “health anxiety” than all the The private insurance systems won’t pay out if they can avoid it as profit is priority. Public health systems are often grotesquely underfunded and resourced, there are enough Drs, nurses or diagnostic machines and the highly trained technicians needed operate these. capitalism is the dominant economic system and as this enforced and implemented at this time, there are subsidies for the wealthy, and rationing for everyone else.

This situation has been getting worse and worse in the UK and the NHS and majority of the middle class professionals and better off working class people with a decent education and some better life chances, have been very enthusiastic to embrace this “lifestyle” framework perhaps because other people always seem to be at the sharp end of it, not them and their expensive linen or lycra based lifestyles.

It has all of a sudden come the their attention that in this country you’re gonna die waiting for an ambulance.

Some are getting real scared, and taking another look at the situation.

Some are doubling down. “Obesity” it’s all down to the ‘obesity.’ Context indicates that they actually mean it’s all down to the people failing to be thin enough.

I don’t think we take this attack on fat people seriously enough in the M.E. community. On a moral-solidarity-level or a pragmatic one.

When people started dying of COVID they said it was because these people were elderly-not because a deadly virus is circulating because you’re failing to be young enough- or have pre/existing conditions and/or “obesity” (- not because a deadly virus is circulating, because you’re not ‘healthy enough’ or too fat to withstand it like a well trained immune hero soldier.

Have LC, let’s focus on the “risk factors” it’s because you’re a woman or because of your age -not because you’re a living biological being exposed to a deadly virus, and all viruses not least deadly viruses may have lasting consequences, no
that’ll be because you’re too female and neither old nor young enough, too menstrual cycleish or too peri or too post menopausal, probably too fat too- if you’re a skinny little child or a man of any age or younger woman, shrug because we’re focused on the “risk factors” and telling everyone it won’t happen to them at school or work or in their commute or at the theatre. The individual survival chances for sufferers young old and intern are for the foreseeable future entirely their own business. No one’s gonna rush to anyone’s aid “risk factors”, or no.

So I think we have a long long way to go before healthcare and risk factors could or would be dealt with to the benefit of our public health overall or our individual life chances across the globe. Rich countries leaders are still violently robbing from those that they’ve been robbing from for centuries, which is how the wealthy become wealthy in the beginning and the wealthy got to choose their own leaders. The bring poverty sickness and death to the populations of countries that they rob, of lands that they rob. Rich countries leaders are also killing those they’ve impoverished within their own borders.

That’s why we can’t get an ambulance in an emergency, ‘ ‘in one of the richest countries on earth’
Statements like these make wonder if people are aware of what system they are backing up and at whose expense. Are people in not ‘one of the richest countries in the world’
in less need of ambulances when they are laying on the ground with life threatening injuries? Or giving birth and succumbing to an infection?

I think people may mean we don’t have the excuse of being “a poor country” in the UK. But that’s still saying, ‘we know you’ve robbed all the others (and that they’re still going without ambulances as a result) to make to this a rich country and now we the people demand that you spoils fairly!’

A bit of;

‘Well it’s a shame the leopard is eating all their faces, but what can we do? can’t be helped. Nonetheless. It’s an absolute intolerable disgrace that the leopard be allowed to eat ours!’


TLDR: @Solstice, I may or may not have understood, if you meant that we’d all for as long as we are alive and have the capacity to do so maintain our curiosity and place our attention onto policy and research and scientific endeavour, then yes I think we will.

If you meant that you hoped we would not be satisfied by meeting the needs of only those with our shared diagnosis, I hope not too!

Ps, now exhausted, have noticed a lot of typos above will sort this and try to break up the text blocks in an edit later, I won’t change the meaning. You can probably guess the words I meant to use anyway. But it makes it harder work, do I will sort it.

Also sorry everyone couldn’t manage to explain all this in summary.

 

[Solstice]

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.