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

The structures at Newcastle are somewhat opaque but I think it would be wrong to assume that Julia Newton is the clinic lead. The service is described as: "Chronic Fatigue Syndrome/ME therapy psychology service" and is provided under by the Psychology in healthcare > Adult health psychology service: https://www.newcastle-hospitals.nhs.uk/services/psychology-in-healthcare/

Julia Newton's bio page https://www.newcastle-hospitals.nhs.uk/consultants/julia-newton/ gives her clinical practice is as the Falls and syncope service: https://www.newcastle-hospitals.nhs.uk/services/falls-and-syncope-service/ in addition to her teaching role and her role as Medical Director for the Academic Health Science Network – North East & North Cumbria. It doesn't really look like she'd have much space to lead the CFS service !

 

I really don't keep up with this - I Googled "IAG + Cochrane" to confirm what the discussion was about - OK, just spotted it's in the title of the thread!

I don't think we can object to Cochrane but I think a line is crossed when NICE links up with Cochrane - NICE is a public body, charged with an incredibly important role i.e. producing guidelines, and it doesn't build confidence when it links up with Cochrane.

Yes I agree that we unfortunately have to be aware of the risks posed by Cochrane and indeed to keep putting that to our elected representatives etc.

It would seem a whole lot simpler if NICE ditched Cochrane, or at least consistently vetted Cochrane studies, and based on experience to date, binned them.

 

I never you knew you were that much of an optimist. It's nice to dream, though. I will be watching for flying pigs, if anyone asks. They're just a little airborne, they're still good.

 

Perhaps I should've said most senior interested physician. However, she has definitely been involved in producing materials for "CRESTA", their chronic fatigue service, as of last year, and is the only consultant physician listed in their management leaflet:

 

The CRESTA clinic is not the Chronic Fatigue Syndrome Clinic - CRESTA is located within the Campus for Ageing and Vitality where Julia Newton has her Falls and Syncope clinical practice, the CRESTA page lists the lead consultant as Dr Adam Evans https://www.newcastle-hospitals.nhs.uk/services/chronic-fatigue/

I've no idea what the internal politics or management hierarchies are at Newcastle but there appears to be a clear split between the professional 'ownership' of the CFS clinic https://www.newcastle-hospitals.nhs.../chronic-fatigue-syndrome-me-therapy-service/ which is physically located at Molineux Street NHS Centre and the CRESTA service which is located at Westgate Road, Newcastle upon Tyne.

 

I haven't been paying attention to the IAG recently, have they finally selected the last few members?

 

No idea. There has been no news since the tragic death of Hilda's son. I am on the mailing list, so I guess if I haven't heard anything, it's not yet sorted.

 

I just wrote to Cochrane again, mainly in response to the announcement that NICE and Cochrane were going to be teaming up. I have sent it to Hilda to add to her database of articles about the Exercise review. It covers a lot of bases and it will be interesting to see what response I get, if any. https://healthycontrol.org/2021/11/26/letter-to-toby-lasserson-cochrane/ (NB I address Toby by his first name as I know him from when I worked at Cochrane)

 

Extremely good.

 

Yes thank you so much @Caroline Struthers, excellent!

 

Underselling it. It's amazing. Thank you, Caroline! Love to use Garner's words trashing Cochrane against him. Not so much as a gotcha but to get Cochrane to at least acknowledge his unprofessional behavior and how it reflects poorly on them.

 

Thank you!

 

I think you are right, and they may have revealed what's really going on. When patients report a benefit at clinics from a therapy, it's usually because they thought the therapist was nice or supportive.

One of the biggest early sources of "improvement" is the diagnosis itself (i.e., this leads to less confusion and uncertainty, and patients feel some relief, so they may report slightly better on questionnaires as a result).

That may not mean their illness was any better as a result, just that they enjoyed having a nice chat with someone who would listen to them and be sympathetic, and that they benefited from being taken seriously in terms of actually having an illness. (A low bar, I admit.)

Of course, there's a flip side: when that relationship breaks down, problems (aside from harms and unfulfilled expectations) might occur as a result.

If the patient doesn't see the therapist as nice or supportive (perhaps because they prefer actual treatment rather than a chat which they may not have the energy for), sympathy can quickly run out.

The patient becomes "one of the bad ones" instead of "one of the good ones" and the therapists might become accusatory and absolutist ("It's my way or the highway!"). Patients can feel abused or disbelieved as a result.

(I think societal bias against disabled people can play a part here, because therapists are just people too. There's a strong narrative of good disabled people who try hard and achieve, and bad disabled people who are scroungers, fakers or just weak.)

Some of the qualitative data I have looked at -- bearing in mind that the same therapists who were rated good by some are rated bad by others -- clearly shows this pattern: the patient wasn't deferential enough, or asked too many questions, and the therapist or clinic suddenly turned hostile. (Maybe their prejudice was reignited.)

Patients who nod, smile, lie and say they're complying with treatment, even when they aren't and/or it doesn't help, seem to fare better than those who outright say "no".

 

I'm very concerned about this non-zero thing. I think it goes beyond the review just being a bad review - it's actively misleading

Good work @Caroline Struthers, that was a well written letter

 

Right. And as I sort of touched on in my video with David Tuller, you could equally say, with that sort of loosey-goosey application of standards, that there's at least equally strong evidence of a non-zero risk of harm, too.

 

Yes. I don't think people realise how bad the "non-zero" thing is. Even people in Cochrane. I think editors are so used to the ridiculous statistics-speak like "non-zero effect" they don't think about what it actually means for patients and clinicians trying to understand what the review results mean. A non-zero effect means any benefit is so small as to be useless. Is that made clear in the review? No it isn't. The authors have just removed any mention of effect size to avoid downgrading the certainty level from moderate to low. This is not in the spirit of helping patients who are supposed to be the beneficiaries of Cochrane as a charity. It is in the spirit of saving face for the Cochrane authors. It is, as David Tovey said, indefensible. Now Cochrane have let the indefensible thing happen, are they going to carry on defending it? .

 

for sharing

https://twitter.com/user/status/1465254070705442818

 

Thank you Caroline. This is very important for norwegian ME patient. I am 20 years into my ME but i recently found out that things are getting worse for ME patients applying for a benefit pension. They now added to CBT has to try GET. The Cochrane Larun et al from the Norwegian institute of public health has a lot of influence. And Larun et al will not be withdrawn by the researchers themselves. Cochrane will have to do it. Only yesterday the head of research in the Norwegian institute of public health liked and shared an article by a norwegian LP coach about how unscientific the NICE process was.