Jonathan Edwards
Senior Member (Voting Rights)
That was never my meaning there.
The meaning was that if a study fails at the most basic level nobody needs to know more.
The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)
- Thread starter Sasha
- Start date
That was never my meaning there.
The meaning was that if a study fails at the most basic level nobody needs to know more.
Jonathan Edwards
Senior Member (Voting Rights)
I guess my point is that the answer will come back, yes we are terribly sorry about the mess ups and the inconvenience but the study did show that this treatment is best. (Thank you for your interest.)
Yours sincerely,
Anonymous minion.
I expect you're right.
Given that the study is not due to be completed until some time late next year and probably not be published until the year after, there is theoretically at least a chance to redesign it to include other models of care for people with ME/CFS to respond to.
I guess it's all just wishful thinking on my part. I'm so fed up with my 37 years of no medical care for my ME/CFS. I hate to see the whole disaster perpertuated and millions wasted every year on useless rehab therapy.
Yeah, which is why I agree with @Trish that the complaint being on record is useful and that getting a clear message
Ike I outlined to government, MPs and via charities is useful. Then people can’t say this was unexpected or nobody told them.
Agree it’s probably not the biggest focus and you have better and more effective things to be doing, this wasn’t an ask of you. But what we (us, the community) can.
Nightsong
Senior Member (Voting Rights)
It might be worth making the case to the politicians & civil servants that there is evidence against supposedly "rehabilitative" interventions, and that now includes economic evidence. The Kielland & Liu wage analysis from Norwegian population register data suggests that rehabilitation-based interventions do not produce improvement in wage earning capacity; the Peters study was a null result for prolonged inpatient rehab; the Cornelis paper demonstrates that many patients find exercise therapies unduly burdensome. And the ME Action survey of patients' experiences of the NHS clinics showed that many patients consider them to be dire, with over a third of respondents wanting them to be closed and nearly half wanted them to be changed fundamentally.
Utsikt
Senior Member (Voting Rights)
It’s more a case of the latter. We know very well what we want - appropriate healthcare and support.
I see this everywhere now that’s I’ve started paying attention to it. Cancer patients want studies on acupuncture and hypnosis and so on. It’s always because the current offers are insufficient.
Add MAGENTA and FITNET-NHS as well. And the Charité rehab study.
—
An issue with arguing that they’re not including the most severe is that they might go about trying to find a way to get rehabbers into their bedrooms. That’s not going to end well.
Agreed, it’s a bit of a weird criticism that patients don’t know what they want. No patient group is unified in what they want. And yet we get it more often aimed at us, for the simple reason that those who should know what the best thing for us don’t.
As ever this is down to a failure of the professionals not the patients.
Too late, this study is already there.
I've been looking at the clinic centres selected for inclusion in the study; Leeds, Leicester, Hertfordshire and Cornwall.
Leeds
"We are an outpatient adult service and accept referrals for individuals aged 17 and over. Referrals are accepted from within the NHS West Yorkshire Integrated Care Board (ICB) area (in Leeds), which is part of the wider West Yorkshire Integrated Care System (WYICS). This includes:
- Bradford District and Craven
- Calderdale
- Kirklees
- Leeds
- Wakefield District
We accept referrals for people with all severities of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)."
Referral information for professionals - Our Services
www.leedsandyorkpft.nhs.uk
Cornwall
"Diagnostic and therapeutic options will be tailored to the individual's needs, including offering appointments in clinics, video consultations, telephone or email contacts and domiciliary or home visits.
We ensure that the 2021 NICE guidelines for people with ME or chronic fatigue syndrome are implemented"
Chronic fatigue syndrome and ME
An outpatient and community-based service for people with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).
www.cornwallft.nhs.uk
Hertfordshire
Very little public info.
Service details
www.hct.nhs.uk
Leicester
Long COVID and ME/CFS clinics are separate.
ME/CFS clinic is based at the Mental Health Unit whereas
Long COVID is is here:
1,000 patients now part of Leicester Long Covid studies - NIHR Biomedical Research Centre Leicester
1,000 patients have been part of vital studies looking at treatment, rehabilitation and long-term effects of covid 19.
leicesterbrc.nihr.ac.uk
Jonathan Edwards
Senior Member (Voting Rights)
Not at all. The implication is that once you have got it, you realise that you should never have thought you wanted it. And I often say in John Lewis these days, when the assistant asks me which one I want, that I have no idea which one I want, you are supposed to advise me so that I can know what I want.
The NHS is not there to provide what people want if there is no reason to think they will be genuinely glad they had it, rather than just saying so politely to the therapist..
I have just been at a very constructive Forward-ME meeting. It was heartening to see how many people agreed on what they thought people with ME/CFS 'want'. But it reminded me of just how much pressure there has been in other contexts for things wanted that nobody should be lobbying for.
That’s very positive. Anything more you can say now? Will we hear more from official channels or is this more a general vibe check?
Jonathan Edwards
Senior Member (Voting Rights)
It was a new very severe working group meeting. I don't know what is made public from these meetings. Five physicians were present, which was impressive. The meeting had been made aware of the list of asks for very severe on our thread, together with a similar input from MEA from a Facebook survey.
I agree this is important and feels like it should have been done.
An even further question that seems wacky but I’d like to confirm is answered is making sure there is even a protocol somewhere that defines for ME/CFS how many people they are tracking in order to potentially whittle-down, or even more crooked (and into fraud territory) literally cherry-pick out 250 of those results.
Without that being defined we aren't even talking about 'just' the issue of deliberately causing drop-outs by using the survey itself as a bar, but the potential for tech to make it more difficult and less rewarding for those 'giving the wrong answers' to continue on, or even just delete them given the black box of it.
You would think that given what happened with PACE being 'fraudy' and many can debate on why/whether that y needs to be added then the response would be to ensure at least increased pretence of transparency.
It feels like too many of the 'obvious even to students' because it would be a straight fail issue if in their work, but post-PACE-scandal and post-new-guideline now legally have been utterly flagged as being hindsight so noone has an excuse for that 'error' or 'issue' problems have not just been not avoided but it looks like deliberately augmented, with the use of black-box tech then making this more murky
- were things like basic research ethics of what counts as fraud etc ever updated to account for use of tech and put in basic rules and protocols to prove things are above board regarding data? including gerrymandering in the 'recruitment' and 'causing of drop-outs' process?
Because I'm certain the the business/marketing literature, and therefore the tech literature that these individuals who are from that side will be expected to know absolutely talks about 'barriers to access' because even at my lowly level when you design a form or a website or to sign up for something then that is the big conversation - making sure you aren't putting people off eg by asking them for data you don't need and they mightn't want to give that's irrelevant for that part, but also because of discrimination.
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Sasha
Senior Member (Voting Rights)
This all sounds very good! Thank you for putting our list forward. The idea of a working group especially to tackle the problems of the very severe is a great initiative.
Suffolkres
Senior Member (Voting Rights)
So glad this is being interrogated ans follow3d up by S4ME!
@Andy I know you've now received a response to your feedback from the HERITAGE team and that they were aware of some of the issues and were working on them
I've been trying to work out how different the LOCOMOTION study is to the HERITAGE one, apart from the fact that ME/CFS clinics have been added.
Came across this comment on the LOCOMOTION thread in 2024!
I've been trying to work out how different the LOCOMOTION study is to the HERITAGE one, apart from the fact that ME/CFS clinics have been added.
Came across this comment on the LOCOMOTION thread in 2024!
