UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Is there any way we can find out?

Maybe contact the MS society & cancer research UK & show them this and ask "do you get asked this stuff?"

Could we then ask MEA why they / clinics are asking pwme?

Not that they are listening, as the reponse to the excellent S4ME letter showed.

MEA also say they are working with clinics to implement the NICE guidelines, which is a worry, given they don't seem to understand the problems with this "toolkit" and seem to want to avoid talking to patients about clinics too.

I am so frustrated by this. What are MEA thinking?!

 

That's a terrifying thought, claiming to help while using the tools they claim do so as a silencing technique.

 

This is the third questionnaire- how many are there in total?
It would be worth adding them all together to get an estimate of “time” and also “effort” to complete these. How long is the clinic visit going to be, even I, who is quite quick on a good day, would need near half an hour just for forms….

I’d be happy to do that as an experiment, wearing my visible and collecting data.

Also Visible are looking to imminently publish some data, HRV not acting as was thought. Another nail in the BPS coffin. Don’t get too despondent!

 

But none of them are under the GMC?

I mean technically the clinics should be staffed by a non-psych clinician, but that's another conversation, and there is no sensible way if you had that these types of silly things should be being used.

SO why the GMC? Are they trying to influence them and their guidelines?

 

I don’t know who regulates Tyson or Dr Gladwell. Could be HCPC, depends what regulated title they use.

 

Yep, even the bloody PIP form is better designed than this one. And that’s saying something.

 

That one of the designers of the Toolkit thought that PEM could last for a few minutes strongly suggests they really Don't Know what PEM is.

 

I think, apart from the questionnaire being far too long, the choice of responses ambiguous and various other problems, the main problem is it doesn't include anything related to PEM, symptoms and the cumulative effects of exertions.[/QUOTE]

It seems clear from the options (and the 'PEM survey' not even being PEM, and we know that'll get dropped) and putting 'avoid' as an option on this and such a list of other things on the 'adapt, don't do other things etc' that it is enticing people to tick behavioural explanations.

It simply is not a questionnaire for ME/CFS


SO the authors should be required to explaining what it actually is. And how the disease works that they really think this is apparently for. Goodness knows what they think they are measuring it's nonsense.

Just a list no healthy person would wade through of 98 randomly chosen activities they require anyone who can't do them without harm to themselves to say they 'avoid'. or 'can't'. Or according to their instruction if it is a particularly good day they've not had for a month then tick 'can'.. because what 3 weeks later they will get an email with the same list.. why?

How have MEA been conned into this method which clearly looks like someone believing they are mathematical demonstrating 'something'

What exactly does 'avoid' count as in this circumstance if it is a SF-36 replacement (I doubt it given it's a PROM and it was the physical function measure that particularly failed to show any significance for Crawley et al 2013 paper inspiring them to suggest the measures needed to change)

Sadly what I can see from anything this produces is that due to being a subjective measure noone is checking and people could feel social pressure, or feel coerced by perceived threats into changing their answers upwards for that this could end up employ behavioural psychology to magic the impression of improvement just from people who want to escape treatment they are finding harmful or not useful but need to not be given a black mark of 'not motivated enough to complete', or the need to please etc

I do not see how using this fixes that fundamental issue?

 

If the ME Association secretly funded these people just as one final 'let's give them a go in good faith to get the proof they can't/won't change' then they've played a blinder.

I just can't get over the threatening coercive behaviour pretty much warning anyone 'only the right feedback' being so heavily demonstrated in plain sight

 

Did the MEA give funding (£90,000 ?) from the Ramsay Research Fund to this Toolkit project? If so I should think Dr Ramsay is turning in his grave.

 

Actually laughing that Gladwell published a whole paper undermining the CFQ then went on to produce this rubbish.

yes they did, we discussed it around the 20-30 pages of this thread!

 

Excellent Trish. I’d like to review some items before making suggestions if that’s ok, will maybe take a few days. What I have in mind is to strengthen your points, not criticisms!

 

I think the issue at the heart of all this, or one of them, is that between @sarahtyson & most of us here, there is a fundamental disagreement over what PEM actually means/is, because it was Sarah herself that said the bit about it lasting a few mins (& IIRC that being directly after an activity).

And she is a person with both an Me/CFS dx herself and is a carer for someone with ME/CFS too.

I'm not saying that we own the term & get to dictate what it is, I'm simply saying what we have all said before = that people are clearly meaning different things when they use the term 'PEM'/'PESE', & that that difference in meaning is a major problem in all areas of discourse. Community, public awareness, Dr-patient, researcher-subject etc etc

I dont know what the answer is TBH i just feel a sense of despair over the whole thing.

I'm not up to looking at the questionanaire, but does it really give 'avoid' an activity as an option as an answer?

Edit: forgive me if tha answer to that question has already been made clear in previous posts, i am too ill to read them all

 

For DWP, work, I believe is is 1 hour per week

 

More of an insight was that she had no idea what fatigability is. Huge red flag

 

i was right about what? I was just asking if the questionnaire does actually use that term ' avoid' before i commented on the use of it, i'd seen the word in a couple of posts while skimming the thread in my bleary eyed goofy/foggy state so i wanted to check i'd understood.

you are so right, & very helpful reminender of how theyve now been officlially difined, for better or worse