BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

Who knows what sort of covert operations NICE has in place to prevent leaking.

 

If deconditioning doesn’t cause ME/CFS, what possible reason is there to push, I’m sorry, encourage, the patient to increase their activity level? Who says it’s possible to increase activity level? As others have said, this is an obvious rhetorical shift to save their jobs. That’s the problem with these ME/CFS govt services... it’s like a monster that grows and grows. No one ever gets fired for being wrong or causing harm. The whole purpose of these so-called services is to provide employment opportunities for people with nothing better to do.

 

Yes, jobs for people with nothing to do and, apparently nothing worth contributing except to help benefits agencies and insurers to avoid paying out.

What, if any, biomarkers are there of primary deconditioning by the way? Is it possible to test for it beyond exercise tests and a physical examination? Is there a blood test, for example, that could show the difference between a sedentary couch potato and someone who is purely deconditioned, though not ill?

If not why not?

If they had any real interest in finding solutions or proving their hypothesis wouldn't that have been a good starting point and then test ME patients against that.

20+ years in I daresay I am probably deconditioned to some degree. However, for the first 10 years I reckon I was still fitter and less deconditioned than a couch potato. At that point I was surprised to find I was still physically stronger than my teenage niece but pain, brain fog & problems with coordination were primary limitations, increased fatiguability was a little further down the list.

No, the deconditioning business must have always been an excuse because the only other explanation makes these guys look extremely incompe Otherw

Otherwise they would have researched deconditioning, wouldn't they?

 

https://www.actionforme.org.uk/news/bacme-position-paper-comment-and-feedback/

Good to see in my view; in the 2000s, and probably for sometime afterwards, Action for ME would have been reluctant to make such a statement.

 

As someone who has given them some stick in the past, I have to say well done & thank you to AfME for this one.

 

I notice some questions around deconditioning and whether it can be identified. I think NASA probably has a lot of information on the subject because of concern for astronauts. But any of that info would be way beyond my ability to sort through.

 

Yes they did some tests on that a few years back.

More than the BPS crew have ever done despite claiming so many people are deconditioned and ill because of it.

If the BPS crew were serious about it why didn't they do tests - take blood, MRIs and what have you as healthy volunteers deconditionnand recondition & then compare with ME patients. It could easily be done but that might have neatly disproved their hypothesis and put a spoke in the wheel of their gravy train.

 

I'll call you a cynic then.

NICE don't share guidelines between committees until consultation. For the same reason, we wouldn't expect to see theirs early either.

10 November is really close! It's not like they have to wait long. NICE wouldn't break its own embargo to do that.

Their whole thing is that they follow process. They are a bureaucracy. They follow process therefore they are. Any faults and strengths they may have are entirely due to their focus on that one thing.

 

The critical words in that are "NICE" and "committees".

 

old thread which refers to an old thread about deconditioning
https://www.s4me.info/threads/old-thread-on-deconditioning-by-oceanblue-at-pr.5632/

 

up until very,recently.

Certainly I don't remember any comment from them after BACMEs conference in 2018 (with Per Fink).

Or more recently on BACMEs guide for Severe ME
https://www.s4me.info/threads/new-bacme-guidelines-for-severe-me.7900/
https://www.s4me.info/threads/a-lif...acme-guidelines-2019-naomi-whittingham.11379/

But then a lot of people seem to be changing their tune these days.

Maybe, if the blinkers have truly been lifted, AfME might like to one day make a statement about Esther Crawleys 'research'.

 

And "pacing up".

Baby steps but still very welcome to see them move in the right direction.

 

https://meassociation.org.uk/2020/1...sition-statement-on-the-management-of-me-cfs/

 

Yes and as there are no RCT's on these revised forms of CBT/GET, NICE surely couldn't recommend them when it's whole thing is to only recommend treatments on the basis of (supposed) gold standard RCT's?

So if, big if, NICE were to reject BPS CBT/GET where does this leave them? How do they dig themselves out of this hole?

 

Not trying to pick a fight, but just to give the benefit of my experience of one of these clinics. They were very supportive when it came to dealing with my employer, and my PHI supplier. As it happens I had a very well timed slight upturn in health which has had me able to work part time from home, but the clinic head wrote a letter to my employer and insurer ahead of that, allowing me the opportunity to proof read first. They were truly supportive.

They've not pushed a GET approach either, and I'm on the look out for it. Would it be nice if they were medical practioners adminstering medication for management or cure, yes of course. But the research isn't there (yet) to do that. What I genuinely see from the local clinic is a team doing its best to help people adjust to what ME means for their life, offer some suggestions on management, and general support (particularly in being believed).

I struggle with these threads as I understand that great damage has been done to people in the past, and maybe is still be done today in some (or even a lot of) clinics. But my experience over the last 12mths is that they're making the best of a bad job. Appreciate that might not be a popular view. The main criticism I'd had of the clinic was the lack of accessibility, I really struggled with attending the course last summer. However, with CV19, the courses are now run via Zoom. Last year that would still have been a big effort, and probably still wouldn't be achievable for those who are severe, but it's definitely an improvement.

 

Ah, that would be brilliant! If only.

 

Yes. I agree. I've not been pushed to try more exercise, it's been left to me to suggest what is appropriate (and they've accepted that that physical level has dropped a bit now I' working). Will see whether my opinion changes come the end of this 'Management into Practice' course.

 

I for one would be very happy to believe that multidisciplinary team clinics were beginning to provide sensible and sympathetic advice and care.

The problem as I see it is that if BACME members want to convince us that they know what they are doing they need to say exactly what they are doing and on what basis they justify it. When I gave evidence to NICE one thing I pointed out was that it would be impossible for health professionals to know that they were doing things the right way without some sort of formal trial. From what we can see of the published trials most improvement is likely to be independent on any specific intervention.

I have been disappointed that health care professionals seem to take an arrogant position indicating that they think they somehow have training that allows them to judge whether they are doing things right. They need to be much more self-critical. The first step is to give a clear description of what they think should be recommended instead of PACE type procedures and why they think so. Vague statements about activity management are no good.

Common sense suggests that for the foreseeable future the best care is going to have to be based on experience of feedback from patients, free of any prior theorising. There are not going to be any trials for a good while and valid trials are going to be difficult to do. Somehow provision of support needs to continue. So it is not unreasonable to have current healthcare professionals try to adjust to a new way of doing things. But they must not be allowed to hide behind 'treatment tailored to the individual' - which means you can make up whatever you like. Tailoring may well be part of what is needed but it needs to be as a variation of some basic policy that is written down and agreed.