New NICE guideline on chronic fatigue syndrome: more ideology than science? 2022, Flottorp et al

I suspect with researchers like Crawley, their Universities will continue to back them as long as they keep bringing in the research funding they do.

For example with Crawley, though she brings controversy, she also brings the funding, research posts and publications that helps keep up the Universities ratings. The University of Bristol can not but be aware of her research misconduct and actively participated in her attempts to bully @dave30th in to silence, but I suspect as long as the money keeps coming in they will stand behind her.

 

^Absolutely this^

A complication is that in the weird semi devolved world of the UK, NIHR is effectively 'English NIHR' so engagement with the organisation has to be made on that basis. Forward ME would be the ideal locus for communicating with NIHR and its political masters but there's no reason that any group of patients shouldn't seek to get the ball rolling so long as the approach isn't identifiable as exclusively or predominantly from NI, Scotland or Wales - so if politicians are recruited those from English constituencies would be key.

NIHR Grants can be searched at: https://fundingawards.nihr.ac.uk/search - the top left has an award type drop down box - a large proportion of the chronic fatigue syndrome grants were for "career development" !

This may be relevant:

https://www.s4me.info/threads/uk-ni...se-public-partnerships-call-brief-2022.24423/

And another thread on this:
https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406710

 

Bristol University has form: https://theboar.org/2015/02/bristol-university-sacks-lecturer-failure-secure-grant/

 

Trial by Error by David Tuller: My Letter Responding to Norway Health Leader's Efforts to Denigrate My "Activist" Work

quote:
Since Dr Flottorp invoked my name and work, I figured the situation warranted an intervention on my part. I have sent the following letter to Dr Jong;

 

Yes, those who have power over them but also researchers and health care professionals new to the field of ME and 'MUS' research in general.

Even if most of our criticism seems to be common sense and every evidence-based medicine activist should share it, we don't get much support from outside ME and Long Covid advocacy and some biomedical ME / Long Covid researchers.

Maybe we need to be persistent with our criticism even if it seems to be redundant (in particular to those of our patient advocates and (citizen) scientists that have been involved for a while I think it must be extremely tiresome to repeat always the same and yet see always more ridiculous statements.)

I'm afraid though that it could last a long while until there will better evidence for a pathophysiological explanation for ME. In addition, if poor science dominates not only psychological but also much of the biomedical research on ME and now Long Covid, the new and often promising interest in our illness could soon result in disappointment and again disinterest, now with even more 'evidence' that a biomedical pathomechanism is hard to find.

I therefore think it is still relevant to reject poor science, whether it's biomedical or psychological research, and get more people interested in the field. Sensible people won't be attracted to study, being involved in or invest in ME research if they see an abundance of unjustified claims, though, both by people involved biomedical and by people involved in psychological research.

Also, as a lay person who learned about clinical trial methodology first on S4ME, I'm still wondering how so many sensible people seem to misunderstand the point about the need of objective outcomes in unblinded trials, and that acknowledging this need doesn't mean to negate the relevance of patient reported outcomes.

Yes, thank you both Michiel and Dave for your excellent rebuttal and letters.

I was thinking that some points maybe could be spelt out even more clearly but didn't manage to succinctly word that.

Instead I started a couple of new threads. -- Once again, apologies for being repetitive:

What's the difference between using symptoms for making a diagnosis in clinical care vs measuring a treatment effect in clinical trials? (Discussion thread)

The importance of patient-reported outcomes: a call for their comprehensive integration in cardiovascular clinical trials, 2014, Anker et al

Psychosocial interventions for fatigue during cancer treatment with palliative intent (Cochrane Review), 2017

 

After re-reading your posts, @dave30th and @Michiel Tack , I think you worded all relevant points as clearly as possible.

Also the table with quotes about why it's necessary to use objective outcomes in an open label trial is very good, especially the reference to Moustgaard 2014:

“In a clinical trial where the blinding of patients and care providers is not possible but no improvement is found for an ‘objective outcome’ (eg, peak flow), it seems reasonable to be less confident in an improvement of a ‘subjective outcome’ (eg. quality of life) as this may not be caused by the intervention as such.”

(More at link .)

Perhaps what I actually meant was that there are some points worth a discussion beyond these simple facts, e.g. taking into account the discussion on the potential usefulness of placebos, the question why there are certain diseases or symptoms that seem to be more affected by placebos than others and what to conclude from that etc.

Another not directly related point but I think worth discussing I think is how symptom questionnaires are validated. What does it mean if e.g. a fatigue scale or a physical function questionnaire is validated, if validating doesn't comprise a correlation with objective measurements but it's only tested if it's consistent with other subjective measures? What does this mean for the use of questionnaires in clinical trials?

Apologies for heading off-topic. Just searched and found a discussion thread on questionnaires here.

 

Adding a cross-link to @Jonathan Edwards 's excellent letter in response to Flottorp et al.: https://www.s4me.info/threads/nice-...s-now-been-published.6197/page-42#post-406768

 

Indeed if you can (which sadly not all who read what BPS write can) step back and think - hmmm so PEM/PESE is the cardinal symptom for ME/CFS.

They've found some cancer survivors have developed PEM/PESE.

How does this make their research where due to their using Oxford/Fukada their participants mightn't have PEM/PESE (and therefore their treatments don't work for people with PEM/PESE), valid for either?

It's typical of their intellectual dishonesty-based arguments. Infer that by putting 2 unconnected sentences together they are related and add up to explain the final claim.

It's like saying

You say electric cars have batteries.

But we found some electric motorbikes also have batteries.

So our research and treatment for cars, that doesn't check/note whether the cars we used in our testing sample were electric or combustion engine (so could all be petrol cars), shouldn't be downgraded in a report for the best way to maintain electric cars.

 

and the review had to be done because the CDC had thrown out CBT and GET, based on their assessment of the research in 2017. Based on the Academy of Medicine (previously Institute of Medicine) being commissioned to look into the state of research/treatment of patients, which reported in 2015.

And a few other pretty big things happened or were provided after that

 

and the workwell research demonstrating PEM. with all it's non-subjective issues.

They are using sophism again to try and make it look like PEM is the subjective variable using deflection when really it is what it is replacing that is subjective.

 

trust them to go for the word 'beliefs'.

You sort of want to peel out that Mrs Merton classic line of "so what first attracted you to the millionaire Paul Daniels?" to say back to them.

There is a reason that one has to declare financial etc conflicts of interest. They tend to influence what you claim to believe in once they are big enough

 

Has anyone submitted a comment to The Lancet in response to Flottorp et al.?

 

PEM is often misunderstood to mean an increase of symptoms after exercise rather than the symptom in ME where there may be a similar immediate effect of exercise but the symptoms evoked are different from normal ones, last an extended length of time and may be delayed for up to 3 days before they appear and only when these symptoms appear does the patient know they have overexerted.

In many diseases people experience an exacerbation with exercise but people with asthma usually get more breathless or with RA they have more pain. The psych people do not define PEM in their research but since they are only looking at fatigue I assume that patients get excessively fatigued after exertion which is not a good thing but is not ME.

 

I have been reading a few proper science books that have been sold for Kindle at 99p. They give the scientific reasons why structured sleep is necessary for good health and why exercise is good for you. It is proper evidence based science and more and more is being discovered about it all the time.

I am sure that a lot of people agree with the Biopsych people because they think that is what they are saying. The problem is they START by assuming there is no disease present least of all a disease of energy production.

It is very possible that many ME symptoms are caused by the process of sleep being disrupted by our disease and it is a tragedy that ME makes it impossible for us to preserve our health by gaining the benefits of exercise. Where they get the idea that this means we are exercise phobic and need to stay awake when our bodies are grasping for the benefits of sleep whenever it can get them is beyond understanding.

It is confusing causation and correlation to a crazy degree. Yet when we complain about this basic prejudice, a literal pre judgement, people think we are rejecting all the proper science of exercise and sleep so believe the condemnation we are surrounded by.

 

Yes, from a single root cause, not just in medicine but in anything, it can rapidly cascade and diverge into multiple interdependent causal pathways. The complexity can be considerable, especially when all you can see are the downstream endpoints/results, with no understanding of the upstream causes and interactions.

I suppose trying to understand it is akin to trying to reverse engineer an incredibly complex machine ... with the major limitation that, unlike a machine, you cannot just pull things apart to better understand how it is working.

 

What frustrates me the most about all of this is the knowledge of what could have been.

We finally had a guideline that "both sides" were willing to sign up to; a genuine compromise. A guideline that both Jo Daniels and Willy Weir both signed off on is one hell of an achievement.

No-one, and no group, was going to agree with all of it, but it could have heralded a reset in relations, an acknowledgement of how little we really know, a commitment to put patients' welfare first, and the provision of genuinely supportive care. It could have been an entente cordiale moment. Instead, we've faced these constant rearguard actions, including the outrageous denigration of those who participated - a stream of recriminations apparently supported by many Royal Colleges and the editors of major journals.

I'm increasingly of the view that the only way forward - the only way for patients to be treated with even a modicum of respect and consideration - is for reform to be imposed on the NHS from without, through Parliamentary action. The current attitudes towards pwME, like most forms of bigotry, do not exist in a vacuum. If senior leaders in the NHS, placed under pressure from politicians, make it clear to their subordinates that the current situation is unacceptable then the NHS will have no choice but to find a way to adapt to that reality.

 

I actually think it is the other way around.

The BPS programme was asked for by politicians. The BPS people were doing their bidding finding a cheap way to get people back to work. Now medicine has been taken over by the toadies of the politicians who are happy to sing the same tune. The NIHR was set up by politicians to bypass quality research and provide cheap answers.

The only way out of this is to have a government that acknowledges the need for an extra £80Bn in NHS funding to provide a safe and effective service whether for cancer or ME. Unfortunately mishandling of Covid has just made the situation twice as bad.

Those in medicine who believed in quality health care and reliable evidence were elbowed out by politics.

Further discussion of this point has been moved to this existing thread:
Government and Insurance companies - establishing the BPS model