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Cross Party Group on ME

Discussion in 'General ME/CFS News' started by Yogi, Oct 9, 2012.

  1. alex3619

    alex3619 Senior Member

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    One point that still bothers me about ME vs CFS, is that its entirely possible to have mild ME that is well managed (pacing etc) and so not have chronic fatigue. The symptom is chronic fatiguability - excessive fatigue and other symptoms after minimal activity. Without such activity, with good pacing, such fatigue might not exist.

    Obviously this is not accurate for very severe patients. Just surviving is probably too high an energy demand. Between the two extremes I would expect to see some patients who are well managed who only have occasional fatigue. If at any point they push themselves, that is when the fatigue manifests.

    So CFS and ME are not interchangeable. There is overlap though.Similar arguments follow from looking at other aspects of pathophysiology.

    However I do not see an effective name change happening in advance of the science. If we could, today, get ME fully recognized and accurately diagnosed, the psychosomatic crowd would then say fine, its a matter of published record thatt ME is hysteria, a psychosomatic illness. So what? They wont give up their diagnosis without us really understanding the pathophysiology, and ignore contrary evidence. We also need good diagnostic biomarkers ... several of the current biomarkers are being examined to see if they are diagnostic. This includes PENE and low natural killer cell function, as well as an altered bright/dim cell ratio.

    Bye, Alex
    Valentijn likes this.
  2. Bob

    Bob

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    Gosh, you've been through a lot, firestormm.
    Isn't it incredible, that anyone reading your case history could possibly come to the conclusion that it's all in your mind, and that a bit of CBT will sort you out! This applies to all of us, of course, but I think your excellent description of your illness is a very good example of why the medical profession is collectively mind-bogglingly ignorant, in relation to ME/CFS!
    currer likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    It shows that when docs dont know how to treat someone they just throw them to the lions, i mean psychobabblers.
  4. Bob

    Bob

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    I think Mark's given a most helpful explanation of some of the reasons why the name issue is so important for many patients.
    But the name issue is mixed up with so much politics and history, that I think it's something that patients will probably never all agree on.
    heapsreal likes this.
  5. Firestormm

    Firestormm Guest

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    The 'problem' I referred to Mark is one of the objectivity of that diagnosis. I too was diagnosed with ME prior to the adoption of the label CFS by some doctors and the 'establishment'. What does the diagnosis of ME mean?

    I grew up if you like only recognising 'ME'. The first book I was bought on the subject was from Charles Shepherd. All it spoke of was 'ME'. Does this history make my initial diagnosis using that term mean I have something more valid? No. Of course not.

    If you pop along to a doctor now, or even then, and you see even a specialist who uses the label ME and even jots this down on your notes - so what? What difference does it make and how will this effect the situation should e.g. the unlikely occur and ICCME is adopted?

    Would all those like me previously diagnosed - or all those currently diagnosed - by a doctor using the label 'ME' be any safer in their diagnosis? If everyone is now being confirmed as having 'ME or CFS' by reference to NICE in a clinical setting - does that make their diagnosis any less relevant to those like me who came before?

    Because my diagnosis previously, and since, on occasion has come from e.g. an immunologist conversant with 'ME' - does that make my diagnosis safer, more valid? Does it rely totally on the experience of the specialist himself?

    What of those doctors I have seen over the years who noted 'CFS' on my notes because they were perfectly able to use that term should they wish to do so? Or those few who have noted 'encephalopathy'?

    This is what I mean by a 'problem'. Even when objective testing is introduced based on biomarkers for some aspect of the reported symptoms - will this lead to everyone being re-diagnosed? I doubt it very much.

    If a treatment is produced based on e.g. a muscle/lactic acid test, then people might be tested and treated accordingly with a dose dependent on the test result - but for the whole condition? No.

    I simply cannot see how they will be able - practically - to re-appraise everyone and they aren't going to bother when all we have a competing criteria that lead to no quantifiable treatment improvements or better quality of life for patients.
  6. Firestormm

    Firestormm Guest

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    Alex, I'm in need of a return to my bed. Wikipedia is actually rather good in demonstrating some signs and how they might be represented by observed behaviour/symptoms. Not all such observations relate to a neurological cause - this is obvious - but we were talking about ME and what might be construed by a patient as a neurological SIGN relating to their primary diagnosis specifially.

    An extract:

    I think that - as it has also happened to me - 'we' tend to feel that because a referral to a neurologist is not always (ever) forthcoming when we are experiencing symptoms that we feel might (or are) associated with a screwed noggin or nervous system - that our condition, our suffering is not being taken seriously.

    In the past 15 years this has certainly on occasion been something I have felt and it really did get me down. That does not (cannot) equate to 'ME' having distinct neurological SIGNS however. Kindly indicate what SIGNS you associate with ME. Thanks.

    Will try and get back later.
  7. Bob

    Bob

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    I do agree with some of the points that you've made in this thread, Firestormm, and I think I understand your perspective.
    The whole field of 'CFS' and 'ME' is muddled and it maybe very difficult to separate the two, in practical terms.

    But I do think that very good attempts have been made to define an illness called 'ME' ('ME' has been defined in various ways.)
    I personally define 'ME' very loosely, with PEM, or PENE, as the only necessary defining feature. (But I know that many wouldn't agree with me about that.)
    And we all recognise that there are many various symptoms that people experience in addition to PEM.

    I agree with you that some 'CFS' definitions can define 'CFS' in a very similar way to 'ME', and can be quite selective, so they might only select neurological or immunological CFS/ME patients.
    I also agree that patients defined by an 'ME' criteria might not all have the same discrete disease.
    Or that a vast majority of 'CFS' patients may well have a very similar disease.
    I agree that it's impossible to know exactly what we all suffer from, given the current state of research, and the lack of powerful epidemiological studies.

    But, the problem that I personally have with the term 'CFS', is that it has been used as an all-inclusive, catch-all, term. For this reason, and all the reasons that Mark explained, the term 'CFS' is unhelpful.
    'CFS' doesn't describe an illness, and it isn't supposed to.
    Whereas, 'ME' is at least an attempt to define a discrete illness.

    So, the two terms have different uses, or at least, they had different uses before they were muddled together.
    'ME' descriptions have always been based on observations of a closely related cohort of patients. Or that was the intention.
    This is the case for the ICC, and the CCC, as well.
    The descriptions are not just plucked out of the air.
    They are an attempt to describe and define an illness, or a pattern of symptoms, experienced by patients who have very similar illness experiences.
    Maybe the same could be said of some 'CFS' criteria, but the loosest CFS criteria only require 'fatigue' as a symptom, and so this does not attempt to define patients with a closely related pattern of symptoms.

    So, I agree that it's all a muddle, but there are many reasons that many patients relate to the term 'ME', or prefer the term 'ME'. (Mark has explained some of the reasons.)
    But also, those patients who relate to the CCC/ICC (i.e. they read the diagnostic criteria, and recognise their own illness as being carefully and accurately described) will often prefer these diagnostic criteria, because they are obviously more appropriate for them, if they describe their illness accurately.

    Anyone who relates to descriptions of 'ME', such as the ICC, will say to themselves "aha, that's exactly what I've got, and I want it investigated, and researched". But if research is carried out on 'CFS', then anyone who is convinced that they've got 'ME', just sees funds being wasted, and resources being drained into pointless and fruitless exercises.

    So, it's complex and muddled, but many patients see their illness being described accurately in some of the more specific 'ME' diagnostic criteria, which are based on observations of patients with very similar patterns of symptoms.

    For me, it's crucial that research funding goes into well defined cohorts.
    I'm happy for any well-defined cohorts to be investigated, however they are defined.
    The various 'ME' criteria are one way to try to define a selective cohort, so it seems very sensible to research these cohorts, at least alongside 'CFS' cohorts, or other cohorts.

    I'm sympathetic for the clinical use of the term 'ME', but also sympathetic to all the objections. I can relate to both sides of the argument.
    I'm sympathetic for using 'ME' in a clinical sense, simply because I think it helps move the arguments forwards, re biomedical/psychological models, and could lead to more appropriate research being carried out. But I wouldn't necessarily want a very selective criteria used exclusively in a clinical setting. An inclusive 'ME' diagnostic criteria could be used, or more than one ME/CFS diagnostic criteria could be used alongside each other, and the results could be used for epidemiological research. Why use just one diagnostic criteria?
    Personally, in a clinical setting, I would want 'ME' to include all 'CFS' patients who experience PEM. So it would be very inclusive. Or more than one criteria could be used.
    I personally think this would be helpful, but I understand the arguments against it.

    I don't think that CFS and ME patients should be separated. I think nearly all of us have an immunological illness. Many of us have had fluctuating levels and types of symptoms, from being severely affected to being mildly affected. So many of us could have been diagnosed with 'ME' at some point during our illness, but might only get a 'CFS' diagnosis later in our illness, or vica versa.

    But I do agree with you that we'd be kidding ourselves, if we thought that the use of the term 'ME' would automatically change everything for the better overnight. That's partly why I usually say that the name issue is a bit of a distraction.

    But I do think we need to push for the recognition of subsets. I think this is crucial for all of us.
    Even if we can't accurately define subsets at this stage, I think that the recognition or acknowledgement that subsets exist would be a massive step forwards.
    It would mean that researchers could start attempting to define subsets, and could more easily research any subsets that they thought appropriate.
    (Mark explained why it's important to research subsets, and there are many reasons why it's crucial.)

    Jonathan Kerr had his research funding turned down I think partly because he was attempting to define subsets. I can't quite remember, but he might have been recruiting patients using a more selective criteria than the NICE definition. I can't remember all the details now, but this sort of behaviour by MRC funding panels is unacceptable, and is partly made possible because of the loose 'CFS' (fatigue) criteria that are in use.

    It's such a complex issue, and I don't think there are any black and white or simplistic answers.
    heapsreal likes this.
  8. Ember

    Ember Senior Member

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    Happily, these patients aren't alone:
  9. Firestormm

    Firestormm Guest

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    If someone pops to a doctor and receives a diagnosis, how often does the patient ask or the doctor reveal what 'criteria' they are using to arrive at said diagnosis?

    There is great confusion caused by all these various criteria when from a patient's point of view all that matters is what their doctor records as the diagnosis and more specifically that they get the diagnosis correct AND THE TREATMENT!!

    On forums and the like those of us that are able, talk about various criteria (more often than not research criteria) as if our diagnosis, made by a doctor, is based on said criteria.

    Largely, 'we' are self-diagnosing based on the criteria that is en vogue. A diagnosis, a clinical diagnosis, is made perhaps with reference to a criteria, but I would argue that it rests largely on the expertise of the diagnosing clinician.

    A person who will use various resources - including experience, listening, assessment - to narrow down and discard the possibilities to arrive at what is most likely to be 'wrong'.

    For those - like me I suppose - who are able to say "Well my doctor diagnosed 'ME' not 'CFS'" I think it is rather unfair to then besmirch those who have 'only' received a 'CFS' diagnosis. Even if you restrict this to those of us in the UK and don't extend it across the Atlantic.

    I often think about the number of times in my life I have received a diagnosis of 'viral infection'. Very very rarely, has the diagnosis been more specific than that. Maybe as patients, maybe as doctors, and 'modern medicine', a more succinct and specific diagnosis should be sought. Maybe such a thing is possible these days - but what would be the point, when the numbers game indicates that for the vast majority, a prescription of 'rest' and 'fluids' and 'vitamin C' would suffice to get the patient back to work or back to the 'former selves'.

    Until such time as a 'test' (unlikely) for 'ME' is forthcoming, or 'tests' (more likely), for elements of the key symptoms and likely contributory causes; is/are produced, 'we' rely totally on the physician to write his diagnosis on a bit of paper. We don't know what he is really basing his decision on, we might get referred to a specialist (someone with more specialist experience and knowledge) for a second opinion, but by and large, and at this time, it matters not one iota in terms of treatment options or likely patient outcome - if those recorded acronyms amount to M.E. or C.F.S.

    Any 'debate' among the more able patients who are engaged with the internet and elsewhere as to who 'meets' any one criteria of choice based on subjective symptomology, is - I would argue - pointless and self-destructive. Personally, I am rather sick and tired of the argument against those who happen to have 'C.F.S.' recorded on their records - not that they ever seem to reveal themselves of course.

    No. This whole 'C.F.S.' ain't 'M.E.' tirade is doing more harm than good and distracting 'us' from the more important fights. Witness the CPG debacle. Going along with the 'here and now' the 'ME or CFS' collective - doesn't dilute anyone's argument and it shouldn't make anyone feel overlooked.

    If the argument is based on - as I believe - this notion that ME/CFS include 'all fatiguing conditions' and a greater proportion of patients whose 'cause' is largely psychological - it's a nonsense. One of the fights should be to ensure that diagnosing physicians adopt the prevalent 'best practice' and to ensure ALL diagnoses meet e.g. in England and Wales, the NICE Guideline.

    That appropriately trained, experienced, and available, specialist medical practitioners are able to see ALL patients with a diagnosis - for a second referral - to DOUBLE ensure that these patients have not been misdiagnosed.

    Of course misdiagnosis based on the current state of play is largely subjective also, but we need to ensure in so far as is possible that every opportunity is given for patients to be treated. NOBODY wants a patient to be diagnosed with a condition like 'ME' (my personal preference based on a dislike of the name CFS), or any other long-term chronic condition with no actual treatment. No-one!

    Anyway.... Picked up a cold from those wonderful kids so need to retire again. Take care.

    Firey by name and Firey by nature. Not. :)
  10. ukxmrv

    ukxmrv Senior Member

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    (Siobhan was deputy convenor of the XPG)

    Published on 4 November 2012

    Paul Hutcheon

    SCOTTISH Labour leader Johann Lamont, below, has removed an ally described by colleagues as "aggressive and abrupt" from a post liasing with MSPs and civic Scotland.

    Siobhan McMahon has been shifted from the coveted role of parliamentary private secretary after less than a year in the job.

    The Central Scotland MSP's formal job description was linked to "external engagement", but in reality she was seen to be the leader's eyes and ears in the party.

    She also chaired shadow Cabinet meetings. However, several Labour sources, speaking on condition of anonymity, said McMahon's uncompromising style had not got down well with colleagues.

    One said: "She was far too aggressive and abrupt. I don't think she was temperamentally suited to the role."

    Another source said: "She was never slow to express an opinion."

    In September, a Glasgow-based sex worker accused McMahon of making her cry at a policy meeting in the Parliament.

    She wrote on her blog: "I literally can't remember the last time someone spoke to me with such aggression."

    The sex worker added: "So then I cried, through a mixture of shock, fury, and, well, sadness I guess."

    McMahon stopped being PPS last month and will instead take up a position "engaging" with young people. Her father, Michael, is also a Labour MSP.

    He backed Ken Macintosh for the Labour leadership last year, while his daughter supported Lamont.

    A Scottish Labour spokesman said: "Siobhan McMahon has been tasked with engaging with young people within the party membership and beyond. This is an important role in Johann Lamont's attempt to rebuild Scottish Labour."
    Related articles
  11. ukxmrv

    ukxmrv Senior Member

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    Susan Webster leaves Action for M.E.
    Susan Webster, our Project Co-ordinator for Scotland, left Action for M.E. at the end of October to take up the post of Head of Policy and Campaigns with MND Scotland (Motor Neurone Disease).
  12. alex3619

    alex3619 Senior Member

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    Julius Caesar, meet Tower of Babel ... or is that Babble?

    Divide et impera = Divide and Conquer

    In a situation where every definition and interpretation has different strengths and weaknesses, and where the use of terms is so variable that in one context a term like CFS can mean one thing, and in another it means something else, it is not surprising that the community is fractured on this issue.

    There is no way out of this mess using either CFS or ME as terms by themselves. First, we need a definitive biomarker. Then we need a definitive diagnosis which will probably have a new name. There may be many such diagnoses in time, each with their own names. That is when the name controversy will end. It is science that will resolve this issue, and science is proceeding way too slowly for comfort.

    In dealing with naming we need to be clear that we are talking politics. Good scientists will automatically allow for subgrouping and use well defined patient cohorts as the science and budge allows. Poor scientists wont, but in the end their research will be relegated to the very large trashpile of science. So the pressing issue is political, including political interference in the scientific process, and political bias toward funding.

    Politics has only a little to do with reason, evidence or science. Its about ideologies, agendas, power, pursuasion and rhetoric.

    I strongly suspect we will never get anywhere with the name debate until we accept this is primarily about politics. Its a political game, and for some it means wealth, influence and accolade, but for others it means poverty, illness and suffering. These are high stakes for us.

    Bye, Alex
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  13. Firestormm

    Firestormm Guest

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    No. Not politics but lack of proof Alex. There is no proof to substantiate any of the names and therefore no hope of an aetiology to back up any of the names. Without a strong enough case you cannot hope to 'win' your argument. What has always been missing is proof - pathological proof - and of a nature and size that swings any argument.

    There is no guarantee that any name thus far advanced is the 'right' one because of this lack of proof. Nothing to say that something might emerge that for example, reveals an abnormality wholly unconnected to the 'neurological' entry in WHO (as it was based anyway on "outbreaks").

    And should such evidence ever emerge who would be willing to surrender these historic connections to assumed validity? How much has that inertia got to do with things? Is that 'politics' too?

    In a sense - a strong sense - the arguments advanced leading up to the NICE Guideline were strong enough to see NICE acknowledge the pre-existing and a new (encephalopathy) nomen. The three names acknowledged are assumed to be related (encephalomyelitis, encephalopathy, and chronic fatigue syndrome).

    Until clear evidence emerges that either supports or dispels either or none of these names and their associated definitions - it isn't politics that is leading to controversy and frustration and this unrelenting 'holding pattern'. It is an unwillingness in some quarters to acknowledge this lack of proof.
    barbc56 likes this.
  14. alex3619

    alex3619 Senior Member

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    Hi Firestormm, on this point we are in agreement. That is why I mentioned biomarkers. To finish this debate requires definitive biomedical advances. My point is that in the absence of such advances politics is the primary driving force, especially in the UK medical establishment. We have no way of knowing when the science to define and understand ME and related illnesses will be complete. Until it is politics will be a big issue. The establishment does not accept the evidence. That is not a scientific choice, its a political one. Even the choice of who gets nominated to investigate things in organizations like NICE is political. Bye, Alex
    peggy-sue likes this.
  15. Firestormm

    Firestormm Guest

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    Agreed. Although as I am not a part of the medical establishment - merely an interested observer - I think there is more 'politics' in the patient 'community' than there is in the establishment.

    Call me naive. I don't mind. I happen to think that more people should admit to being naive than claiming to know the inside story. More questions. Less assumptions. Might lead to less 'pollution' generally.
  16. Firestormm

    Firestormm Guest

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    This was flagged on the other wee forum the other day. A petition to the European Parliament from the European ME Alliance (EMEA). I think it is relevant to the topic of discussion - namely nomenclature (well you know what I mean) - but here they are calling for 'recognition' (my word) and equal treatment for both CFS and ME as a neurological disease across member states:

    Unfortunately, this is potentially as restrictive as previous efforts, don't you think? It's a hard one I admit. But pending definitive (or even partial consensus) research that confirms an aetiology for encephalomyelitis over anything else proposed or something more relevant - use of the term and definition arising - is to me at least restrictive and potentially wrong.

    Apparently the request, in part, is beyond the authority of the EU. Shame. Rather dilutes the effort somewhat. Still it does raise awareness I suppose.

    Part of the reply received from one MEP:

  17. Bob

    Bob

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    I fundamentally disagree with you, Firestormm, except to say that we always need more and better evidence.

    In the old days of medicine, before we had sophisticated medical knowledge and technology, it's interesting to understand how we would define the nature of a disease. They would observe the patients closely, and they would make careful notes about the signs and symptoms. If there were a number of patients with the same signs and symptoms, then they could lump them together, and give a name to the condition. Then they could look for treatments that worked for that particular patient group. If one treatment worked for one patient, then it would be worth trying on the other patients in that group to see if it would work as a general treatment. It's basic medicine.

    Actually, this is still the basis of medicine today, and it is pretty much what has happened with the ICC. A number of physicians and researchers have come together, to try to define a group of patients who have very similar symptoms, the best they can with the available evidence.

    So I don't agree that there is no evidence. The evidence is the observation of patients. We need more evidence, obviously, but without better evidence, then this is a good way to proceed, in terms of understanding groups of patients better. The name issue is irrelevant to this process.

    Name issues apart, the ICC can at least be used alongside other (CFS/ME) diagnostic criteria in research. I would argue that it is in fact essential to do so, if we are to move the field forwards, and learn more. At least there is the chance that the ICC defines a group of patients with the same, or similar, disease.

    The loosest interpretation of the NICE guidelines, and the Oxford criteria, diagnose patients who experience fatigue only. That's absolutely no use at all, in terms of trying to understand the nature of an illness, because it probably lumps a wider spectrum of patients together, including (as Wessely and Sharpe acknowledge - see below for details) anxiety and depression patients etc. These two criteria (NICE & Oxford) make absolutely no attempt to try to define a group of similar patients, beyond experiencing 'fatigue'. These are useless definitions, in terms of treatment and research. ("You feel tired or exhausted? OK, you've got CFS." It's a pathetic and sorry excuse for medicine.)

    We do have evidence of biomarkers (e.g. the tilt table test), although I agree that there is always room for stronger and better evidence. It could also be argued that post-exertional malaise is a biomarker.


    Last night, I was reading a paper by Simon Wessely and Michael Sharpe (2005), and I was quite shocked to see that they equated CFS exactly with an anxiety disorder. They said that the symptoms of CFS and anxiety are exactly the same, and that a patient could equally be diagnosed with CFS or anxiety.

    They are wilfully ignoring the wide body of available evidence. They are also ignoring their patients, unless they only see psychological patients (which is highly unlikely). Either way, they are conflating a wide spectrum of illnesses. This is unhelpful and ignorant at best. It's appalling science. If they want to treat psychological patients, then that's fine, but then they should carefully distinguish their cohort, and not hijack the 'CFS' name and the CFS/ME categorisation. CFS is an internationally recognised condition and it's not the same as 'chronic fatigue' or anxiety disorders. 'Chronic fatigue' and 'anxiety' have nothing to do with CFS, so why try to conflate all three? Why say that ME patients need cognitive behavioural treatments? Why say that the PACE Trial found that CBT/GET treated "60%" of CFS patients, when it was in fact 13%, at the very best (using their own data and questionable methodology), or 'clinically ineffective' using objective measures, or deterioration at worst? Why say that CBT/GET are the only and best treatments, and assert that the PACE Trial is evidence of a cognitive/behavioural disorder, when the evidence strongly demonstrates the opposite?

    This is why CFS/ME has become a political issue. These people are using their considerable influence to wreck CFS research, wreck the lives of patients, and to shape policy according to their own desires.

    It's not a lack of evidence that is the problem, but the wilful ignoring and disregard of evidence (however strong or weak), by vested interests, and their monopoly on decision-making, that's the problem.
    Ember and Valentijn like this.
  18. Firestormm

    Firestormm Guest

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    I thought this was perhaps pertinent to the topic under discussion on this thread:

    The full report might be worth a thread of it's own, but the above seemed worth posting here. Perfect harmony and accord :)
    alex3619 likes this.
  19. Firestormm

    Firestormm Guest

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    Scottish Health Care Needs Assessment used as example in the following review from Smith and Wessley dated 17 November 2012

    Will have a read. Might be worth it's own thread for discussion...

    The above now has it's own thread: http://forums.phoenixrising.me/inde...-perspectives-in-guideline-development.20481/
  20. Firestormm

    Firestormm Guest

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    Fall of the Cross Party Group on ME a written summary of the incident: http://www.edmesh.org.uk/2013/02/fall-of-the-cross-party-group-on-me/

    I also noticed that a recent answer in parliament reaffirmed the position re CFS/ME being a neurological condition of unknown origin:

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