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Health services research Equity of access to specialist ME/CFS services in England

Discussion in 'Latest ME/CFS Research' started by Firestormm, Aug 18, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    Good luck finding that sort of help at a CFS clinic in the UK. At best they'll pretend they want to help you for a while, then start trying to talk you into "getting out more", becoming more active, getting rid of the wheelchair, etc. I went to a multi-disciplinary clinic in the Netherlands, and it just means you have 3 or 4 people working together on curing your cognitive and behavioral malfunctions to make your imaginary disease go away..
    Firestormm and Enid like this.
  2. Dolphin

    Dolphin Senior Member

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    While I agree generally with where you are coming from, there is some variation in England in terms of the philosophy used, from what I hear.
  3. Simon

    Simon

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    Hi Justy

    Think the point about England vs rest of the UK is that the NHS in england is managed separately fromthe NHS in Wales, where many key decisions - including overall funding levels - are made by the Welsh Assembly.There is similar devolved power over the NHS in Scotland and NI.

    I live in Wales, and i'm lucky enough to have a good doctor, a consultant physician who is a CFS specialist (or maybe a consultant with a special interest in CFS) and made a 60 mile round trip to see me at home when bedbound and severly affected. Because I could only talk in short burst he spend a good couple of hours in total so we could cover the ground needed. Since then it's mainly been contact by phone and letter, but he's always been very helpful and willing to try new things, including some interesting pharmacological approaches: they didn't work out, but were defintiely worth trying. There is undoubtedly a serious lack of systematic support for CFS patients in Wales, and I know I have been very lucky, but I wanted to say some people do have good experiences.

    I agree too that if the funding is in place for ME clinics, then there's more chance of getting that funding switched to better treatments when demonstrated than if we are starting from scratch.
    justy, currer and Firestormm like this.
  4. Firestormm

    Firestormm Senior Member

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    Like Dolphin I do know (again) where you are coming from. I am based in the UK and currently living in Cornwall. The delivery of care and support had been very highly regarded by patients generally, but that was before our immunology consultant retired and we lost one of only two GPs with special interest. Now things are in a state of flux to say the least, and funding has been cut. We are meeting with the commissioning authority on Tuesday to discuss their proposals and convey our concerns.
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  5. Ember

    Ember Senior Member

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    Isn't this just the rub? GET isn't helpful for any ME patients. Though it may be helpful for some CFS patients, it's contraindicated in cases of ME.
    Enid likes this.
  6. Firestormm

    Firestormm Senior Member

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    Aw crap. Ember. I didn't really want to even go there :) Damn. Well all I can say in that case is that the NICE Guidelines do reinforce that patients can refuse specific treatment if they deem it unsuitable. Doesn't do much for patients who feel they have nothing else to be offered them - but then I have been in this boat for years. It still doesn't exclude me from getting something out of specialist care.

    There is no scientific evidence to suggest that 'people with ME' as opposed to something else in the 'pot' are any more at risk from GET. To which you might reply - well PACE didn't include people with ME :)

    You know aside from CBT which was used within general counselling on a one-to-one basis and as part of mindfulness in group - I have never partaken of GET. Reason being that in all these years whenever the subject has arisen - and to be fair it seldom has - the practitioners I have been referred to all felt I was managing as best I could and had a solid grasp of things.

    Take my present service in Cornishland. You might be referred initially to the medical boffin. Now it was Prof. Pinching, or a GP with Special Interest. They would do their bit and they might with your agreement refer you to one of the Occupational Health lot or the clinical psychologist or anywhere else they thought might be appropriate including neurology etc. or a dietitian or... well you get the picture.

    Now if you visited with the clinical psychologist I dare say she would make use of the dark arts associated with that arcane practice known as CBT and likewise the OT's might embrace the principals of GET. The thing is that they do not deliver something from a CFS/ME Manual. It isn't delivered on the exact same basis for one and all. And if it is delivered at all it is only a part of their work.

    Forgive me. I have been overdoing the mental exertion all week and right now I really am operating through blurred vision. My point - if indeed there is one - is that delivery of care is not always as exact as that laid down by NICE. There is more to it that just CBT and GET.

    However, I do of course recognise that not everyone has been exposed to the same degree of care and support that has in the past been available in my area. Some have. Some haven't. I think it has a great deal to do with the attitude and experience of those delivering the care - as it does with respect to all other conditions.
  7. Simon

    Simon

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    Good luck with this important work, must be taking up a lot of your energy.
    justy likes this.
  8. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Yes that's the point - there are different priorities being set by the various different administrations, which is entirely reasonable because the health challenges are different in each area, not to mention major long standing health inequalities - not too much silicosis in Surrey, unlike in Coatbridge or Rhonda. And of course geography and demographics have a huge impact.

    IVI
  9. Ember

    Ember Senior Member

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    By definition, ME patients suffer from PENE (or PEM), indicating exercise intolerance. A CFS diagnosis makes PEM optional. Jason et al. (2004) compared Fukuda (1994) with the CCC (2003):
  10. user9876

    user9876 Senior Member

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    Sounds like you had a good service in cornwall. My experiance of specialist services for children is that they are poor. In my experience they do offer a good diagnosis service which is very important. However they then seem to sit back leaving community paediatricians to take over and do what ever they like (change diagnosis, start child protection proceedings when child too ill to attend appointments or graded attendance therapy!). You wont here from the specialist service when this happens.
    Firestormm likes this.
  11. Firestormm

    Firestormm Senior Member

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    Thanks y'all.

    I'm now (to coin a British phrase) rather 'bricking it' and frantically trying to tie up all my paperwork. Not anxious about the meeting itself - that will be fine - but it's all the preparation that gets to me. Can't do enough or as well as I would have liked. But sod that. I'm a patient and they will certainly know that :)

    To be honest there isn't a great deal we can do other than express our concerns and reinforce the message which is basically that what we had before was far better than what is being offered now in terms of structure etc.

    Still, we shall see. I'd rather prefer CFS/ME to be placed in among secondary and tertiary care for (other) neurological services. We all seem to share the same or similar multi-discipline approach after all.

    All that's different really in terms of management are the drugs (or lack of them) speaking simplistically. Important to get these new kids on the block (the GP Commissioning Groupies) appraised of all patient concerns as soon as possible methinks.

    Ember. I really do not have a problem you know with anything you have to say. As soon as CCC is accepted and implemented by NICE I will back it to the hilt when it comes to translating this into management practice on a locally delivered basis.



    At present all I can really do at this moment in time is ensure that our local service commissioners adhere to the essence of the NICE Guidelines and the costing structure this calculated. This latter point remains important today, as our own commissioners are not happy at the funding level and have proposed cuts.

    Whenever and wherever a locally delivered service fails the NICE Guideline I can pull them up on it. And that includes giving what patients locally consider unfair 'weight' to psychosocial aetiology.

    Outside of local service provision - which I certainly feel should be available to absolutely everyone to make of what they can but primarily to be a place of expertise and led by medical (non-psychiatric) clinicians with that most valuable of commodities, namely and 'open-mind' and 'flexibility' - I will do my utmost to try and engender change and improvement.

    There is a strong case for 'ME' management and diagnosis being delivered by non-any-other-discipline experts. To some degree it remains rather unique. The greatest obstacle preventing change in terms of NICE recognition is SCIENCE.

    Throughout all the documents I have read recently, led contributed to the NICE Guidelines, 'SCIENCE' or rather the lack of any consensus from science; has meant that NICE felt hampered in it's guidance.

    So if anyone is to blame then I blame those bloody scientists. Well I also blame all those who are still messing about with epidemiological research too. And a few others - but yeah mainly I blame dem scientist folk.

    Edit: Had to do a bit. Sorry about that :)
  12. Firestormm

    Firestormm Senior Member

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    Looking at the services for children is something I would like to be able to do. NICE passes this responsibility along to a paediatrician but to be honest (and with some ignorance) I don't see why children and their parents/carers cannot also be embraced by a single specialist service or for a paediatrician with ME experience and knowledge shouldn't be brought on board. We've unfortunately had to focus on Adult care and provision which to me seems wrong.
  13. Stukindawski

    Stukindawski

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    Having actual experience of one of these ME/CFS centers, it motivated me to register and just share a little of the reality of what goes on there. It has to first be said, I find it slightly insane that a lot people cling heavily to a diagnosis of M.E. Not because it isn't potentially true, but I'm kinda curious how many folks on the NHS can actually claim to have had brain and spinal inflammation confirmed by either their GP or a ME/CFS centers? Whether you have ME or CFS in your view, I'd wager 95% of the time it is simply a cost saving diagnosis which is a great way of avoiding an extensive and expensive medical investigation.

    In my case it may well turn out I have a slightly more difficult to diagnose diabetes type condition. But this I basically had to self diagnose after a lot of reading about my illness. Later (following test results and possible treatments) I'll find out whether this is 'contributory to' or 'solely responsible for' my case of 'Cost-Saving-Itis'.

    Suppose you do have literal ME, an inflammation surely isn't specific to any particular cause anyway, so why you'd unify treatment beyond similarity of injury baffles me to the extreme. How can you tell if one patient has a perpetual health issue that sustains 'myalgic encephalomyelitis' and the next received a 'myalgic encephalomyelitis' type injury from a source that no longer remains consistent (ie toxin vs pathogen).

    It doesn't seem to take a whole lot of reason to see that at the very least, the sheer ignorance of the healthcare system has set up in my area a defacto torture/indoctrination centre. You sit in a room with a bunch of people and you're all told that you can get better simply by following a biopsychosocial model, no mention of varying efficacy. You discuss your progress in public, and due to subjective self reporting, you basically take part in a vanity exam where you give yourself marks. Kinda reminds of the Kinsey institute penis examinations, i.e self report scores versus the re-run where the scientists measured the penises themselves. Guess which set of figures came up smaller. It's worse than the Kinsey penis test in fact, re-run the original test, except get all the men in the room to give their measurements in front of each other :p

    On top of this you're routinely given psychogenic questionnaires where your fatigue symptoms can become scored as negative non participatory cognitions. I mean, for legalities sake, I don't want to call it fraud, and just ignorance and negligence, but make your own mind up by all means.

    So just to get this straight, seldom if anybody gets formally diagnosed (if Fukuda CFS is a diagnosis, then I'm about to inherit a simian nephew), probably apart from someone with an obvious misdiagnosis and ends up having anaemia or a thyroid condition or something. You're prescribed a treatment that, according to a post on this forum has an 11% efficacy based on the weakest possible diagnostic criteria. The method of data collection from patients is highly spurious and misdirects uninformed patients to file their physical symptoms into psychogenic questionnaires.

    If they want to call this 'specialist' care, I'm gonna need a bucket to puke into.

    I'm now going to return to shadows and wait for the passive intellectualism to die out and the protesting and picketing of these god-awful hell-holes to begin.
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  14. Valentijn

    Valentijn Activity Level: 3

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    Welcome to the forum :) It's always nice to see another well-reasoned voice join the never-ending debates!

    I don't think many ME/CFS patients are caught up with the actual meaning of "Myalgic Encephalomyelitis". It's just the first name we got, and an option that can be seen as distinct from CFS, if necessary. That distinction can be very important in some cases, such as the UK where the Oxford definition for CFS is totally inapplicable to many ME/CFS patients. And in some cases that distinction is meaningless, such as in the USA, because there is literally almost no recognition of the name ME.

    Unfortunately the biopsychosocialists have turned the issue into a veritable battleground, by saying that CFS is really just chronic fatigue (or even fatigue). Then they produce results for fatigue patients, say they're applicable to CFS patients, and then equate ME to CFS. Since the recommendations arising from those results, such as exercising more, are very harmful to people with PEM or PENE, an easy way for patients to protect themselves is to point out that they don't have the "CFS" being studied, they have this other "ME" disease.

    Yes, this is a very stupid system. Though I think the biopsychosocialists are starting to see group therapy as a more harmful thing. They don't want patients validating each others' experiences or infecting each other with the belief that they might be physically ill. And they probably make more money if we all get treated one-on-one :p The Dutch handbook recommends group therapy only if the active/stress patients significantly outnumber the passive/really sick patients.

    I'm not as nice - I'll call it fraud. I recently informed the clinic I was going to that I am no longer going there. Instead of sending me an exit questionnaire, or whatever they do, they emailed to inform me that it was a misdiagnosis when they decided I had "fatigue" last year. I got worse instead of improving, and they don't want a record of that - so the solution is that I never had ME/CFS/Fatigue in the first place.


    I agree 100%. Which is why I think these ME/CFS clinics are pretty much guaranteed to be useless, if not harmful, anywhere that CBT rules. The psychologists in charge think that excessive testing just convinces us that we're really sick, instead of a bit crazy, so if it sounds like ME/CFS and the really really basic stuff has been ruled out, all testing is going to cease. That doesn't help the people without ME/CFS much - it's the same stuff a GP is testing for when someone walks in with the same symptoms.


    I agree that picketing and such is going to have to happen before anything changes. But your "waiting" for it sounds somewhat passive as well :D
  15. Esther12

    Esther12 Senior Member

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    Someone just posted this video of Julia Newton, and it seems she takes a rather different approach to the CFS 'experts' I've been exposed too...

    http://forums.phoenixrising.me/inde...atie-prof-julia-newton-mov.18983/#post-289389

    but due to the variability of the CFS centres around, the fact that the system exists as it does still serves to provide places for people like Chalder, White, Crawley, etc to build their careers, and generate their quackery. Even if individual patients were to benefit significantly from their experiences of CFS centres, they could still do more harm than good simply by providing resources to perpetuate prejudices and quackery around CFS.

    (I'm just putting forward this point, rather than saying things would definitely be better if we were to get rid of all CFS centres in the UK. Also, in my experience the services available were just unhelpful, although only marginally so).

    So long as there's so little concern about the standards of care being inflicted upon patients, and about the quackery being produced and promoted by some researchers, I entirely understand why PCTs decide to spend their money on treatments for other conditions with a better evidence base. I sometimes worry that CFS organisations and patients want funding available for CFS as a sign of compassion, or evidence that the suffering of patients in being taken seriously, rather than because we really know that the money can be spent usefully.

    Even if there are a lot of good people working at these centres, I'm doubtful that they could balance out the harm done by the quacks. (All the above could be influenced by the fact that I've never received any helpful medical care or advice, so maybe don't know what I'm missing out on.)

    Also - this is not to be critical of Fire's work to try to keep resources going to the better CFS services. If we are going to have them, we want them to be as good as is possible, and to have centres which can at least do something to balance out the harm done by others.
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  16. Snow Leopard

    Snow Leopard Senior Member

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    On the other hand, those in charge are never going to find out about how ineffective these services are until they start spending serious money and find that these services are not having an impact on things that matter.
    Enid likes this.
  17. Firestormm

    Firestormm Senior Member

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    From what background reading I have been doing ahead of tomorrow, there have been ongoing calls for these specialist centres to complete their own research. Some do. Some don't. Those that have for example, like St Bart's in London and Newton in Nottingham (re: alternate diagnosis) have revealed that for example even the diagnostic criteria of NICE are not always being applied as thoroughly by those referring patients to specialists. Other research (for which there is no provision) into such things as the efficacy of therapy, etc. would actually self-audit these places I think.

    Anyway, it has all been said before by CFS/ME Working Group and by NICE themselves. Everyone deplores the lack of research such as epidemiological - but nobody steps up to the plate and completes it. This is all a part of our review. Those on the ground locally have an opportunity to really get to grips with many of the issues and look to then centralise/collate all the local experience and try to improve and better understand matters.

    This could simply be working in partnership with the local provider to try and assess what patient's think of the effectiveness/helpfulness of the advice and treatment they have received. Or how effective/supportive their local service has been. If local GPs need a kick up the pants. Things like that.

    Bottom line is though. We're all patients. I think trying to do things effectively ourselves can prove a non-starter and even a wake-up call in many cases. :sleep:
  18. Ember

    Ember Senior Member

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    Thanks for the link, Firestormm. The NICE (2007) CFS definition seems to me to be entirely hypocritical with respect to PEM. Though it purports to require PEM, the definition nevertheless makes PEM, as defined by the CCC, optional.

    How does the same document both describe exercise intolerance and prescribe exercise? Perhaps by using a bogus definition of PEM. As defined by the CCC, PEM signifies the “tendency for other associated symptoms within the patient's cluster of symptoms to worsen:”
    NICE (2007), however, requires that patients have only one additional symptom, the first listed being insomnia. And it doesn't require that any symptom other than fatigue be exacerbated by exertion. Instead, “physical or mental exertion makes symptoms worse” is itself listed as an optional symptom.

    Unlike the CCC that describes “a pathologically slow recovery period – usually 24 hours or longer,” NICE (2007) describes “slow recovery over several days.” The ICC goes further, of course, explaining that "a relapse can last days, weeks or longer:"
    If scientific evidence were needed to suggest the cardinal feature of ME is logically inconsistent with prescribing of GET, then the Pacific Exercise Lab's test-retest protocol surely provides it.

    The NICE Guidelines probably represent a much more inclusive CFS definition than Fukuda (1994). NICE (2007) estimates a CFS prevalence of at least 0.2% - 0.4%. But last year, Nacul et al. found a 0.19% prevalence using Fukuda (1994) and 0.11% using the CCC (2003) in three regions of England. The Collin et al. study that you've posted here flags the possible over-diagnosis of CFS in England. It discusses the need “to investigate whether services that make a diagnosis of CFS in 100% of cases are missing important alternative diagnoses such as sleep disorders or depression.”
    The Collins et al. study reports that the median rate of assessments was “10-fold lower than the lowest prevalence of CFS/ME estimated from population studies.” This huge discrepancy between incidence and prevalence must reflect either a “very low uptake of specialist services" or their complete absence. The authors suggest a number of reasons for very low uptake, including poor long-term prognosis, the use “religion, denial and behavioural disengagement to cope,” and poor awareness of services or belief in services on the part of GPs. They don't contemplate that there could be a lack of confidence in services on the part of patients themselves.

    The authors do recommend that particular attention be paid to patients in deprived parts of England and to those from ethnic minorities. “New services need to be set up in areas that have no service and, based on the estimated prevalence of CFS/ME, provision needs to be expanded in many areas that do have a service.”
    The UK establishment continues to obscure ME. Although I haven't read though the full NICE (2007) document, I understand that “the lack of any substantive allusion to this Canadian Consensus Document (2003) in the current GDG guidelines is a serious omission, and one which diminishes the authority of the GDG (Stakeholder Comments; 23rd November 2006).”

    I'm looking forward now to the opening of the new Complex Chronic Disease Clinic in Vancouver. We're fortunate here in that our federal government sponsored the CCC and our provincial government's Clinic is intended:
    Notice the Clinic's separation of ME and CFS.
  19. Firestormm

    Firestormm Senior Member

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    Well I'm not familiar with any of those studies. I can guess what the treatments are though before even looking.
  20. Firestormm

    Firestormm Senior Member

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    Thanks for all of that Ember. It will take a while to reply today.

    Edit:

    I'm not saying you can't, but the Nacul et al. study did not compare the NICE Criteria defined patient cohorts with either of these research definitions, did it? I don't believe you can compare clinical and research - but it may be a mute point given that 'our condition' is largely defined by clinically presented symptomology.

    I am very much aware of potentially how 'over-diagnosed' this condition may indeed prove. One continuous feature of the NICE Guideline (not often referred to) was the express need for secondary and primary care services to generate research from their experience with patients.

    Indeed two studies reported last year finding that two specialist centres reviewed their referrals over a period and determined that respectively 40 and 50% of patients assessed at the time did not have the suspected condition and were referred elsewhere hopefully for more appropriate diagnosis and relevant treatment.

    Hells Bells. I would not want anyone to be incorrectly diagnosed with this condition. Even the condition defined by NICE. But we have to acknowledge there will always be this risk until some sort of objective testing is introduced - no matter how much we play around with the criteria.

    IF the NICE criteria correctly applied (or even used as a part of the diagnostic assessment made) by someone who is experienced in the condition (or in other exclusive conditions), can result in only 50% of those referred 'making the grade' then that is one HELL of a filter. But we need to better ensure that this kind of thing happens across the country and that each location has a diagnosing specialist.

    And guess what? It would seem that the majority of those alternately defined may well have had psychiatric explanations. Now how many times have I heard on the forums over the years, that the great concern is we are picking up too many people with alternate explanations of a solely psychiatric nature?

    But you are NOT going to get NICE to shift their stance until someone reports far better scientific or medical evidence - that is SPECIFIC enough and big enough - to usurp or sit alongside the GET CBT and Activity Management principal recommendations.

    And remember: CBT and GET are NOT recommended for those in the severe category. And where they are applied it is recommended that they are personally tailored. But everyone has the right to say 'no' without their decision affecting them negatively.

    Outside of the PACE Trial I think those who can should focus their funding on coming up with some alternatives or complements to the two therapies above.

    That said, it's largely what has been tried for many many years. Something somewhere needs to change in the way in which we all approach these issues.

    Instead of solely critiquing we need to come up with alternatives or complements. And I don't mean 'pacing' either. It will need to be a more complete alternative to current recommendations and it shouldn't necessarily exclude the above either.

    And please. I am not prepared to debate with anyone that claims I am 'pro-NICE' or 'Anti-ME'. I think we've been round and round about all of that enough now.

    Fire :ill:
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