came across this from Jan 2022 Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (or encephalopathy) (ME) Service A Prior Information Notice by NHS HAMPSHIRE, SOUTHAMPTON AND ISLE OF WIGHT CCG type Contract (Services) Duration 4 year Value £1M https://bidstats.uk/tenders/2022/W03/767230378 which later seems to have been awarded Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (or encephalopathy) (ME) Service A Contract Award Notice by HAMPSHIRE, SOUTHAMPTON AND IOW CCG https://bidstats.uk/tenders/2022/W11/770769329 the service: NHS Funded ME/Chronic Fatigue Syndrome (ME/CFS) Programmes South Coast Fatigue runs a programme to meet the different needs of those individuals who are mild to moderately affected by ME/CFS. https://www.southcoastfatigue.co.uk/nhs/ anyone know anything about this service?
I don't/haven't had any direct experience but it seems worth flagging further afield as a question (maybe MEA could ask) given the context of it being awarded in April 2022 via this process. And thinking of previous notes elsewhere about how contracts can sometimes make it difficult for things to be changed etc. given the length of time these seem to be for. I'm intrigued because as you read through their website and rest of the info on the bidstats link it could be 'either way' regarding the service - there is enough 'trigger words' like recovery-focused, feelings and KPIs with various %s. Both seem ambiguous on mentioning of Nice guidelines or anything specific to old or new ones. But then you look at the staff page and the team seems to be predominantly Occupational Therapists, specialist nurse (who worked in MS) - noting that it doesn't specify who of these works on the ME/CFS service. Although one OT has a background saying they worked in ME/CFS specifically at Romford under Dr Findlay and moved to Hampshire and worked in ME/CFS patients in the NHS and then independently. I'm currently not a fan of seeing only mild/moderate but wondering whether these are historical and funding/politics-related things - it does give me the heebeegeebees of why these are being carved off still
I wonder how much of this historic establishment of services catering just for mild/moderate ME/CFS is because of the previous NICE guidelines that indicated GET/CBT was only appropriate for mild/moderate and gave no real advice for severe ME. Though many of the BPS CFS researchers seem to had already made the decision to ignore severe ME. Was this because it was obvious they were genuinely ill and impossible to pretend that talking and exercise was in any way relevant? I suppose the further advantage of focusing just on mild/moderate is that you can provide a purely outpatient service, which superficially seems cheaper than either domiciliary or inpatient services. That services supposedly catering to a patient grouping from the start excluded at least 25% of the most serious disabled of that grouping is profoundly depressing. Could cancer services get away with saying we provide cancer services except for anyone who has stage four tumours?
Agreed. It feels like there is a story behind that one given it would seem obvious some severe ME have ended up in certain situations. It 'seems' like the artificial divide to the extent of separate services has little justification and would hinder understanding of the fuller picture of the condition/produce more complications etc. Funding wise there is also the risk of cherry-picking. I could go on forever but guess this might distract the thread too much On a side-note for this one (but with general applicability) I find the lack of clarity in what a patient will be faced with outrageous. Why is the constructive ambiguity permitted, when they need information in order to protect their own safety. That is obviously an ethical issue too. It's another one of those 'common sense/knowledge' that not providing clarity whether the person or treatment is something safe or not safe given the ongoing history is not OK, and shouldn't be coming second to internal political needs. But maybe there is a different tack to underline this and the harm associated with it and how it isn't a sustainable position for patients (and does little to reduce stigma/lack of clarity of what the condition for those who might be around someone with ME etc)? When and how do patients get to see and feel reassured whether anything has/will substantially change whilst descriptions can be so fluid?
Well the link from their website to the "essential Fatigue management programme" below, is now showing "404 Page not found" Maybe they are responding to Charles Shepherds email? A bespoke programme for post infection fatigue is required, which is why the team at South Coast Fatigue have adapted their already well developed, bespoke programmes to create an essential fatigue management programme. This is now available and can be used on its own or in conjunction with a vocational rehabilitation programme to support a return to the workplace. Does anyone have a screenshot or download of it?
It has suddenly struck me that one upshot of not providing clarity regarding the service is that people 'sign-up/go along' to find out it is something that would not be useful. 1. Does this mean that the service 'gets paid' even if people only go for one appointment? EDIT* and by this I mean maybe for the whole fee for a series of appointments (like a uni has a cut-off date in first term after which they get the whole fee even if someone drops out) 2. Does this mean that the service then controls how a drop-out/non-completion is reported? ANd would there by any chance be a nudge that means they get paid if the issue was the patient (service can't control for failure patients) vs service not being a match (where they would need to look at payment/future contracts) So instead of having whoever the referrer is writing and noticing that most patients decline the offer due to the service not being safe, the service itself then gets to suggest the reason (which as we know often gets turned into 'patient failure' instead of 'service failure'). As someone from a background working in universities I find it wholly shocking that the drop-out/non-completion rate is not the entire focus of any auditor or oversight. And even more shocking that we have the sham where even in official 'research' based on clinics non-independent academics are allowed to infer the reasons behind it rather than it being thoroughly independent follow-up. Particularly, but not exclusively, when these are outsourced services why on earth has noone cared enough or had enough respect of patients even to make sure that independent horses-mouth surveys/reporting is happenning before contract renewal. And it says a whole lot about the attitude of the industry (and them perhaps being well aware that fixing it would not be in their own interests for many reasons) that they are not obsessively driven by watching and fixing these moments of truth themselves. And shocking that noone seems to really care what state patients are in after they've been through 'their system' yet parrot the 'recovery myth'. I do think we've all perhaps go inadvertently dumped into the middle of a 'wellness industry-focused innovation' where positive (wishful and seeking out info that backs what you want to think) bias in order to keep doing what you want to do and keep being able to claim that is worthwhile has dominated methodology. To the point I suspect it has skewed things to the point those served and sought by the services are probably least likely to have the condition, or the most harmed (because they are physically harmed but the embedded psychological programming and nudges mean they people-pleased ended up saying they were grateful for it and said positive things before collapsing to be polite to the staff). You end up with a self-fulfilling bums-on-seats prophecy, where the question is: goodness knows who the people these services have listened to and worked with most actually are. Even if this sort of thing were justified as an 'add-on' under the guise of 'we don't have any medical treatments yet so we are offering any therapies that might help' then it should only be being paid for after they've set up proper clinics with actual physicians and suitable HCPs who provide adjustments, monitoring and are researching what does and doesn't work (to further the knowledge of the condition). But also when you look at things like MS such places would exist under a very different set-up e.g. a local charity that might be funded by NHS (as these are) but is driven in its decisions by those with the condition - one near me has things like oxygen therapy, therapeutic massage, foot care etc. This is not in the interests of or 'for' as they like to claim this particular demographic of patients when you compare the two - simply by voice and governance and input.
https://www.southcoastfatigue.co.uk/about/ It's all about return to work. I could hardly find a mention of ME/CFS, CFS/ME or even CFS anywhere on the site. I only found this tucked away at the end: The disappearance of ME/CFS has almost been achieved here. Just a single mention in order to sweep up NHS referrals. Guideline? What guideline?
I think that may be part of the rationale. It’s definitely convenient and easy to simply ignore severe people. And it’s still being done, from the majority of research to the majority of news articles to even a large chunk of advocacy. A large majority simply do not understand what severe ME is like and the needs that come with it. But on the part of what psychosomatisers think of severe ME. I invite you to do a Cntrl+F search of “severe” on this thread: Simon Wessely Research & Related Quotes. The paradigm seems to be to dismiss severe people as having psychiatric comorbidity and blaming the disability on that. Similarly saying things like they have very strong beliefs therefore they are the hardest to treat reframes them as maligners with such psyciatric problems, they are in a way, “unsaveable” or “untreatable”. Informally, it seems to be a dismissal as a “lost cause”, someone so irrational, who has such a strong belief they are ill, that it is near impossible to convince them otherwise. Therefore, it is okay if medical services do not cater to these people, as they are lost causes draining our resources. Note all the hoops they have to jump through instead of the more obvious conclusion that the person is just very ill.
To add to this, a severely ill person who has been treated like this will inevitably develop massive trauma, and a distrust for the medical system, which in a sense is a self fulfilling prophecy, making it all the easier to blame on “irrationality” and “psychiatric problems”.
Yes, a little Occam's Razor would go a long way here. Just far too many arbitrary assumptions, inferences, extrapolations, etc, required for their model. None of which have stood up to robust scrutiny, let alone the model as a whole. The best fit model is still the simplest and most obvious: that patients have a serious and currently unidentified physiopathology, that is being grossly misinterpreted and hence mistreated as a psycho-behavioural pathology, with all the drearily predictable adverse secondary consequences that visits upon a human life. But too many empires and egos will be on the chopping block if that reality is recognised by broader society.
