Does the new ME/CFS research of BPS proponents affect anything much now?

[Esther12]

On the other hand it may be in the long run that all the publicity that Crawley has attracted and the writing of such poor papers exposes the nonsense in a way that otherwise would have gone under everyone's radar.

I had thought that could be the case with SMILE... it doesn't seem to have worked out that way though. There's no way NICE would recommend LP at this point, but that's not saying much. I don't see much to indicate that those with real power in this system care about nonsense in ME/CFS papers or the harm it does to patients.

 

[Saz94]

Crawley's research does not actually do that much harm, I suspect.

It does a hell of a lot of harm to the children participating in her research.

 

[Hoopoe]

Telling children they can control the illness, if only they do it right, can cause harm. Since this is not true, it sets them up for guaranteed failure and blame.

 

[MEMarge]

Telling children they can control the illness, if only they do it right, can cause harm. Since this is not true, it sets them up for guaranteed failure and blame.

Crawley's research and position as expert in CFS is still doing tremendous harm to youngsters and their parents.

Not only increasing activity. Threatening them with Social Services if they use their phones "too much".

Too many are being threatened with FII.

 

[Mike Dean]

Can the NICE guidelines specify treatments which are not recommended and should not be funded on the NHS? I think they need to specify that GET and CBT are not recommended treatments, there is no evidence for them, and they may do harm.

Also LP, Graded activity, ACT and other assorted therapies are all currently being recommended, used and researched in the NHS, along with unspecified 'patient centred' therapy.

If these are not explicitly excluded, their purveyors will simply keep doing and getting research funding for them. They may go on their merry way simply renaming and doing what they have done before.

EDIT
The guidelines prohibit or advise against miscellaneous behavioural approaches as well as drugs, so no reason why that shouldn't be extended to GET and coercive CBT, for instance.

https://www.nice.org.uk/guidance/cg...general-management-strategies-after-diagnosis

1.4.6 Strategies that should not be used for CFS/ME
1.4.6.3 Although there is considerable support from patients (particularly people with severe CFS/ME) for the following strategies, healthcare professionals should be aware that there is no controlled trial evidence of benefit:

• Encouraging maintenance of activity levels at substantially less than full capacity to reserve energy for the body to heal itself (sometimes known as the envelope theory).
• Encouraging complete rest (cognitive, physical and emotional) during a setback/relapse.

1.4.6.4 Strategies for managing CFS/ME should not include:

• Prolonged or complete rest or extended periods of daytime rest in response to a slight increase in symptoms.
• An imposed rigid schedule of activity and rest.

 

[Shinygleamy]

This post has been copied and following posts moved from this thread:
Possibility of ME or PVFS after COVID-19, Long Covid




I agree with Andy that this is bonkers, irrespective of who is involved in what.

Crawley's research does not actually do that much harm, I suspect. It is a symptom of a way of approaching ME/CFS, not a cause. If she left the field overnight the remaining clinicians would carry on as before. The research itself actually goes nowhere. Nobody outside the circle of followers takes any notice of it at all. I certainly don't and would not have done if still practicing. The clinical practice is bad because a field of medicine where nobody knows what to do gets populated by people who have no idea what they are doing.

On the other hand Decode ME will give us a powerful piece of information about the genetic component of ME, whatever the result. It cannot fail to give a hugely useful piece of information - the sort of piece that people like myself have leveraged to build a viable disease model. If specific genes come up they will point clearly to specific mechanisms. if they do not that equally points away from mechanisms, which is in many ways more powerful.

The MRC asked me to advise on what was worth funding, together with two US researchers. Of the suggestions on offer the GWAS seemed clearly the one thing worth doing. And it has been funded.

In science you have to forget the political infighting around you and get on with what is worth doing. Most of the money goes to garbage, with results churned out on what might as well be toilet paper. Forget it. It falls under the same heading as merchandising T-shirts sold by sportswear companies. It has no long term impact. Finding a gene does.

I don't think this is entirely true she may have been ignored by some clinicians but she's had a big impact in the world of pediatrics. Before her the main BPS line was that children didn't get M.E therefor when the *NICE guidelines were first written it was Jane Colby who contributed, as the expert on children. Crawley was brought in to fill the gap. If you talked to Nigel Speight he would give you an accurate assessment on the effect Crawley had. She has created the official policy for M.E. in children. Failure to comply with her belief system has left families in serious trouble with their local authorities. As a physician she has also caused a lot of harm to families and has had a large amount of complaints against her, which the GMC has refused to investigate. She complained about Speight because he rescued one of her 'patients' from hospital (this patient walked in but left in a wheel chair)

*My mum has corrected me. It wasn't the NICE guidelines it was the chief medical officer's report that jane colby contributed to. Apparently the bps lot stormed out over the acknowledgement of children with M.E. and the severely ill.

 

[Jonathan Edwards]

It does a hell of a lot of harm to the children participating in her research.

That I can believe.

 

[Jonathan Edwards]

I don't think this is entirely true she may have been ignored by some clinicians but she's had a big impact in the world of pediatrics.

I am not actually disputing that. The point I was making relates to her research. That may do harm to children recruited into studies but I am sceptical that the research itself has made much impact. What makes an impact is 'expert clinicians' going round giving lectures on how to manage an illness. No doubt she does that. But we have seen exactly the same with Lynne Turner Stokes lecturing on rehabilitation for Long Covid without doing any research at all.

 

[Shinygleamy]

I am not actually disputing that. The point I was making relates to her research. That may do harm to children recruited into studies but I am sceptical that the research itself has made much impact. What makes an impact is 'expert clinicians' going round giving lectures on how to manage an illness. No doubt she does that. But we have seen exactly the same with Lynne Turner Stokes lecturing on rehabilitation for Long Covid without doing any research at all.

Are the questions:
Did Crawley's research influence policy?
Did clinician's use her research in a clinical setting?
Did it spawn research from other clinicians?
Did it corroborate other research?
Did it subvert decisions made on what further research to fund?
Or are there better markers for impact?

As a side note i would say that they bunged her a lot of money that could have been used for other things (a minus research income stream), and also by giving her money claimed that they had funded M.E research which they obviously had not.