United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

She doesn't say anything about the fact that one of the most important roles of an occupation therapist is making work change to accommodate the needs of the disabled person, does she. It all seems to be on the shoulders of the patient.

My OT negotiated the provision of additional equipment and the ability to deliver some work from home, and swapped a couple of responsibilities that burned a lot of energy to other colleagues (I took on some of their less physically demanding duties in return). She understood that I couldn't do anything at all to change my illness, we could only change the way we did things in order to make the best use of my skills whilst also conserving energy. It kept me in my job for years longer than I would otherwise have managed, resulted in a more efficient workflow in some ways, and even led to the junior colleague who took over one of my roles later getting a promotion. That's absolutely how it should work.

 

This type of approach is what specialist services and BACME should be promoting. With many of the UK specialist services now in place for over a decade, there is an enormous amount of lost opportunity to collect knowledge and good practice, from helping work situations accommodate people with ME through to the sorts of threads we have here on the best mattresses or sheets.

The focus on rehabilitation that does not work has meant that other opportunities have been missed. A lot of individual therapists must have built up expertise and knowledge but there does not currently seem to be a forum to share it. Presumably addressing these issues is frowned on by high profile service leaders whose reputation is dependent on such as CBT or GET as curative treatments.

 

Perhaps one of the crucial things in my case was that my employer was too small to have its own occupational therapist or specialist HR team. I used Access to Work funding to employ her, which meant that she was looking out for my welfare in the way that a company-employed OT might not have done.

Obviously she understood that I needed to do my job and the employer needed to be happy with any strategies or changes she suggested—and I was lucky in not only having a very constructive employer, but also one that knew they couldn't easily replace my particular skillset and years of local knowledge—but I still think that looking at the role from the point of view of the employee was important.

 

Moved posts

The BACME paper (still in 'proposed' form according to title and dated Oct 2020): https://www.bacme.info/sites/bacme.info/files/BACME Position Paper on the Management of ME-CFS October 2020.pdf

includes that it doesn't believe in the deconditioning model (although it may be a complicating factor) anymore but dysregulation (and a bit about the HPA axis).

It does then include a lot about it's beliefs in rehabilitation:

 

So, as no one has a 'good' understanding of the biological aspects of ME/CFS, that means that according to BACME that there is no one qualified to deliver CBT to pwME so there should be absolutely no CBT?

[Humourless laugh emoji seems to be absent]

 

BACME name change

BACME has elected to change the name of their organisation from "British Association for CFS/ME" to

"British Association of Clinicians in ME/CFS" #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps #CFSME

 

I think to them, despite the lip service 'research is going on into different causes/theories' line, they might mean 'their dysfunction theory' : https://www.bacme.info/sites/bacme.info/files/BACME An Introduction to Dysregulation in MECFS.pdf

Although you can scroll down the BACME dysfunction paper and look at the other references they've used to get an idea of who and the topics/titles.

It's opening quote being: "the key pathology which underpins CFS is potentially best understood in computational terms as resulting from altered messages passing amongst homeostatic networks"

.. is from a paper written by Clark et al 2019: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0213724

A comment I made a while ago on this was that it seemed from looking up prior papers in 2018 that Clark was a psychology grad who was then a medical undergrad
https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-11#post-416025

Julia Newton is one of the 'et al' on the 2019 paper and, along with Stuart Watson has 'supervision' listed under their role on the Clark et al (2019) paper, and the limitations note it is a small study. And a few other papers from them are references in the BACME dysfunction paper too.

 

What does ‘clinicians’ as a term technically include or exclude ?

 

Humility is a quality sadly absent. Morphing or reordering narrative to one's own end is very common however.....as ir rebranding oneself to throw off opposition or complaints..

 

It's a long-standing debate in Catholic doctrine whether the Pope is infallible.

Psychosomatic ideologues have long settled that debate for themselves. Probably never even had one. Didn't need to. I have genuinely never seen a single instance of even the most minimal degree of (non-fake-self-deprecating) humility in this field, haven't even seen a single paper or article that even entertained the possibility that any of this isn't 100% guaranteed.

No one involved in this will ever accept they were wrong. One day they will simply be made irrelevant. Could be soon, or years from now. But even then, no one will even be capable of it, it seems to be a personality trait necessary to go into this: the complete inability to reflect on their own choices and abilities. That's probably why literally everything they say about us is psychological projection of their own failures, along with false attribution errors, which in the hands of so-called experts in behavior and psychology is simply pathetic. Everything they fail at they blame us for. And they fail at everything.

There are people currently lobbying to bring back leaded gasoline. Others want a forced return to a backwards society or that burning coal is a lot smarter than the alternative. There will always be people who are wrong about things, and psychosomatics seems to be medicine's version of reactionaries, incapable of learning or fitting new knowledge that conflicts against their beliefs.

 

The key paragraph from Clark:

"CFS is a complex condition affecting physiological systems. It is important that novel analytical techniques are used to understand the abnormalities that lead to CFS. The underlying network structure of the autonomic system is significantly different to that of controls, with a small number of individual nodes being highly influential. The combined network suggests links across regulatory systems which shows how alterations in single nodes might spread throughout the network to produce alterations in other, even distant, nodes. Replication in a larger cohort is warranted."

Yet despite that, the BACME authors build out a whole (frankly silly) behavioural model of of addressing dysregulation which may have no relationship whatsoever with Clark's "underlying network structure".

It's a shame the quote from Clark wasn't given to the end of the paragraph:

"In this way, the key pathology which underpins CFS is potentially best understood in computational terms as resulting from altered messages passing amongst homeostatic networks [17]. Indeed, it is a curious observation that much of what has been shown in the literature can be described as a failure of such networks to regulate themselves."

Even allowing that Clark's observations are correct, why should a behavioural approach to 'regulating' (what exactly ?) have any value when the argument is that there is an absence of self regulation in homeostasis ? (which anyway must surely be a tautology ??) If homeostasis is out of wack, then by definition any input intended to restore balance in the system will simply push imbalance elsewhere setting the patient on an endless round of trying to catch up with a body that whatever you do with it, won't work properly.

 

Whenever I read this statement, I get a picture in my head of "an ME/CFS specialist clinician" waving a magic wand (only they have) over the patients before beginning treatments that ensure they will accomplish their magical thinking and produce the desired results they say they will and will not harm the patient in any way. I'd like to know where they think they got their magical powers from. So stupid.

 

Who are they going to claim did the previous treatments that caused harm or certain didn't help to 80% of people? Because the 2007 guidelines were clear then with the same line about specialist clinician, and I don't see any learning going on from the same people who feel the right to retain that same self-assigned title.

 

Happy for it to change to 'only @PhysiosforME audited clinicians' - given they were the ones who spotted the harm and are actually investigating what works and how to measure it. That would mean something. I think these working groups need to consider setting that up - given others have made it clear they will naughtily claim that ambiguous title without an audited membership of certain learning instead.

BACME are being naughty pretending they aren't 'the problem' - what do they say about doing the same thing repeatedly with a bad outcome (once a mistake bla bla).What expertise is that?

The gall inferring they sit under 'experts' by not defining that term

 

The harm is a permenant worsening of symptoms, after the crash from exercise I never recovered to that baseline again. Before treatment I mostly just had headaches and a bit of fatigue, afterwards I was housebound and had to spend 14 hours in bed a day and have never recovered (alongside an enormous list of other symptoms I gained too). That is a harm, a very clear and obvious one directly resulting in a PEM resulting from exercise.

 

I'm sorry you've experienced this LTSE, how many years has it lasted for?

 

3 years last week.

 

Brilliant. Adler doesn't provide any answers herself, just prides herself on "good questioning". So she's done her job, and if the answers the patient comes up with don't work, guess who's to blame? And guess who's completely unaccountable?