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

Not at all & I'm really glad to hear that your experience was positive. This is the kind of support that is badly needed.

This is the issue as I see it. Not every clinic is bad & from your report this one sounds good. The snag is there are still bad ones out there. While NICE guidelines are what they are and the status quo remains even the good clinics still have to present themselves as toeing the party line.

This means that good, supportive individuals, working hard and making a difference are tarred with the same brush as the likes of Gladwell & co. The healthcare staff in these good clinics don't speak out and I can see why - they might be stopped from quietly doing what's needed.

The problem we're left with is the patient doesn't know until they get there & then it might be too late.

Tis good to highlight that these guys are out there and ponder how we can address the issue of them having to fly under the radar.

 

There is also a clear extension of this very muddled change of position over "inflexible" GET based on deconditioning: it should have them denounce research based on this very premise, namely FITNET, NICE, PACE and, well, all of them, literally the entire body of evidence is on "inflexible" GET since GET is inflexible by definition, built entirely on the premise of deconditioning, explicitly said so in every trial. Which is not the case here. Hence not a real change of position, merely a change of framing of said position, which is the same as no change, a 360 spin at best.

As "positions" go, all I see here is the spinning dancer illusion, where the dancer can spin rightward or leftward depending on how you want to see it spin. Whichever way it is spinning, all the dancer is doing is doing circles.

 

My last addition of contradiction and confusion. Pete Gladwell is the person who I've seen the most at the clinic!

Yes, couldn't agree more.

 

Okay. **picks jaw up off floor**

You've got to wonder what's going on there. i don't doubt your word in the slightest but this man has gone on record endorsing stuff that is just plain wrong and harmful.

Please don't think I am dismissive of your suffering @ringding but you mentioned that you were managing to work a little (though I'm sure that's a struggle and sacrifices have been made elsewhere). I wonder if that's the difference - if you are at the more severe end of things he assumes you should be able to push your way through?

 

Hmm... they make reference to 'physiological dysregulation'. Looking back to the content of the METRIC training for GPs, the content doesn't refer to the 'deconditioning hypothesis' of CFS (and ME,) but rather the 'dysregulation hypothesis'.

So what is BACME's position now on the (still available) GP METRIC training? It seems they are subtly trying to say ME/CFS patients have all the physiological problems of deconditioning and that these can be helped by a gradual (albeit flexible) increase in physical activity, whilst claiming they don't subscribe to the idea that the primary cause (original but not necessarily the maintaining cause) was deconditioning.

 

No problem, I don't take that as dismissive. Perhaps you're right, I think it's a good point. Even at my worst I could get to the clinic in person, although it was a maybe effort and I paid for it for a while each time.
As I said previously I know that others have had terrible advice through the Clinics. Maybe that could be additional data to get in future surveys (thinking of the MEAction one from 2019 which I helped with a tiny bit) , their severity I mean, as it could help understand whether it influences the advice received. Tricky as we know grading severity is difficult, but the subjective view of respondents on their severity might still be informative.

 

I think that would be well worth capturing.

Also, perhaps, the attitude or approach patients who deteriorated or improved while under the care of the clinic were met with.

It might be if you are severe and don't improve but don't deteriorate they are still supportive but if you were milder and deteriorated while following advice that the gaslighting begins.

 

precisely.
What are they 'treating'?
The fact that they frame it as 'rehabilitation'

means that they must believe it is reversible.

this is an excerpt from the GETSET manual (which was based on the PACE trial GET manuals, helped by Jessica Bavinton (MBACME)):

https://www.qmul.ac.uk/wolfson/medi.../GETSET-therapists-manual-with-appendices.pdf

so as I previously mentioned although they say they do not believe that the 'deconditioning model' is the cause, the 'rehabilitation/treatment' approach would suggest that they do believe it to perpetuate the condition, otherwise why 'treat' it?

If the service is purely to help and support ME/CFS patients adjust and cope with living with the condition then it should be made much clearer and not involve 'rehab' based on debunked theories and highly flawed research.

 

Coincidentally, over on the Cochrane thread @Caroline Struthers has just posted about her recent exchange with Cochrane over the CBT review:

 

The problem with the clinics, even when they are helpful to people in some ways is that they do not understand or acknowledge what ME actually is. I am sure that there are many people working there who are supportive and do not despise their patients, who are willing to help with employment and benefits but those benefits are incidental.

I am finding it hard to say what I mean. They are all about rehabilitation but they are using the same techniques that are used for people who have a normal exercise system. Like AIDS affects the immune system so you can't boost the immune system to cure it, missing out on that basic fact of ME - that it gets worse with activity - means that any good they do is accidental and they do not know enough to explain to patients the dangers of doing too much.

Since I first joined the ME Association in 1985 it has been known that the most dangerous time for ME patients is when we start to feel better. I am not alone in being wheelchair bound because of thinking I was cured.

To really help people with ME they need an approach that sees us as different from all the other fatiguing diseases and not at all related to deconditioning. We cannot gain aerobic fitness except by unbelievably small steps with a constant danger of making things worse.

 

https://twitter.com/user/status/1320458490620641280

 

Trial by Error by David Tuller: The British Association for CFS/ME Switches Gears

It seems likely or at least possible that members of the organization anticipate significant revisions from NICE and want to position themselves for a new environment. If they believed the new guidance would merely replicate the 2007 version and its recommendations for GET and CBT, they would presumably be less eager to repudiate interventions they once endorsed.

 

The GP METRIC training states the following:

It also states the following:

 

I'd not read their guide to severe M.E. before, but followed the ME Association's link to it. There is some pretty harmful advice contained in it (I think harmful advice mixed in with some common sense advice is the most dangerous).

https://www.bacme.info/sites/bacme.info/files/BACME Severely Affected Shared Practice FINAL Jan 19.pdf

That was published just last year so I really don't think there is any change in BACME's approach, they are just being more careful with how they are wording it.

 

Statements like this demonstrate that BACME still consider ME/CFS as primarily a reversible condition:

 

I think an m.e. patient should have every bleeding aid they can think of! They are ignoring how difficult it is for a formerly fit person to use aids in any way. If a wheel chair keeps a person weller than they would otherwise be, they should be encouraged to use it!

 

 All contain a programme of gradually increasing activity
 All are collaborative, start at a very low, easily manageable, level of activity and proceed gradually
 As patients improve they become more accustomed to (and less fearful of) feelings of effort which accompany exertion
 Patients' activity levels are driven by the programme (and patient choice) not by the symptoms
 All aim to put patients back in control of their symptoms (rather than being controlled by symptoms)

What really annoys me about this laser focus on activity is the knowledge that we actually do have to focus on it. So they've even done us out of an easy-to-share hashtag like #JustStopIt when organisations publish lists like this! Grump, grump.

Still don't understand what's so bloody hard about making tick-lists for avoiding over-activity, though...

 

I now refer to GET as Gaslighting Exercise Therapy. Gaslighting is very subtle. It’s not until you’re pretty deep into it that you realize you're worse off.

 

You beat me to it - thank you for sharing

here's the direct link to our blog page https://www.physiosforme.com/post/bacme-position-paper-our-statement

 

see
A Life Hidden - "Beneath the Surface" (Analysis of BACME Guidelines), 2019, Naomi Whittingham
https://www.s4me.info/threads/a-lif...acme-guidelines-2019-naomi-whittingham.11379/