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Cross Party Group on ME

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

  1. Bob

    Bob

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    lol

    Very clever Esther! :)

    I've always found angles difficult to understand! :confused:


    (Note to barb: You'll only get Esther's pun if you spot your typo! ;))
     
  2. ukxmrv

    ukxmrv Senior Member

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    It may seem that way to people posting here but to the ME who have had that diagnosis from before CFS times it is important to get resources for them. Also for any other undx'ed ME patients.

    I'm not seeing a willingness here to understand the position of the old ME patients or to accept that they have the right to determine their own medical treatment and future.

    Some old PWME don't find this obtruse or think that the debate is difficult. It's been the same goals they have been fighting for decades. I don't find it hard to argue for a clinic for "PWME only" and not NICE because I was seen by ME doctors pre-CFS and before NICE. I'd like to see another doctor with an interest in ME and some research done on this patient populations. If we have a clinic with a well defined ME group (whatever the criteria) then it will be easier to apply for research.

    In the UK they have been shuffled into fatigue clinics that they don't want to be in. For the Scots XPG to be talking about a clinic they want to avoid the AFME influence that has been trying to bring the fatigue clinics to that area.

    There's nothing obtruse or small or difficult to understand here unless one wants to complicate it to things that it isn't. The ME patients would like research that proves what other patient populations they are like/ the same as but this is secondary to having a XPG that represents them, clinics that treat them and research that could provide a cure.

    Pre-CFS ME patients are voting for their interests. It's simple. It may not be understandable to other groups but they are not accountable to other groups. It's up to the pre-CFS ME patients to determine their own future. I fail to understand why other groups would find this a problem. It's up to them to fight for their own clinic and own XPG if they want one.

    If PWCFS or PWCF disagee with the way PWME are going about this or fail to understand their objectives it is all the more reason for the two groups to be seperated. We can only work together with mutual respect.
     
  3. Mark

    Mark Acting CEO

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    Having given my first impressions at the start of this thread, and followed the thread since, I just want to make a couple of quick points.

    Firstly, we still have very little information on what this was really all about, we just have the MEA article and that is certainly a view from one side of the argument. So I am still not reaching any conclusions, and I think I did qualify my earlier remarks because that's just the way things look from the MEA piece. I do respect the 25% group and TYMES trust, and I think they deserve a hearing before one reaches a verdict on what happened here.

    Secondly, regarding the definition and naming issues, some of the argument on this thread, against those who try to distinguish ME from CFS, is going a little too far IMO. I think we have to bear in mind that with the NICE definition, we are not even really talking about "CFS". The NICE definition (based on the Oxford definition) includes CF (chronic fatigue) as well. I would probably accept the arguments that this is just a semantic game because nobody knows where to draw the line, if we were just talking about Fukuda vs CCC vs ICC vs Ramsey. But we are also talking about "ME/CFS" vs "tired for 6 months" here. The UK's ridiculously broad CFS definition unquestionably includes masses of people who don't have "CFS", "ME", "FM" or anything like it.
     
  4. barbc56

    barbc56 Senior Member

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    How can we address subsets if we don't have a solid scientific/medical knowledge base from which will hopefully spring hypothesis and research. It's not quite as easy as this but I think it's a good direction to start. If we divide me/cfs and don't have a solid knowledge base to do this, then we have nothing to build on because of a weak foundation.

    Barb C.:>)

    ETA I am speaking in general about a focus on differentiating between me and cfs. As for the meeting/vote, I have no idea as we don't have enough information at this point to really know what happened.
     
  5. barbc56

    barbc56 Senior Member

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    LOL!!! Damn spellcheck!!:lol:
     
  6. Mark

    Mark Acting CEO

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    I do agree with much of this, and I do agree that the argument of the "PWME" should be heard respectfully. But there's an issue of language here that those people on the "PWME" side should always keep in mind: the definitions in the US are different and the label "CFS" means something different there. All too often, this whole argument looks rather too much like a comedy sketch with a group of people arguing about "how big is your fanny?", and neither of them having a clue what the other actually means. "I say potato, you say potato, all the more reason for us to be separated"...

    "PWME" should also bear in mind that at least a large proportion of their "post-CFS" ME comrades in the UK, and all their US-based ME comrades - in other words certainly the large majority of people with the same illness as themselves - are in the "PWCFS" group.

    So the part that begins to make me feel uneasy is when I read this:


    In the US, everyone with ME, CFS or whatever knows their illness as "CFS" - or perhaps "ME/CFS". ME has (pretty much) never existed there as a diagnosis. So if a US PWCFS disagrees with the way a UK PWME is going about this, then I hope when you say that's a reason for them to be separated you are not talking about a medical or clinical separation.

    Simply: in the US, pretty much anybody with ME is diagnosed "CFS", and most of them don't understand why you're making a fuss about the name. What is more important to them is campaigning for biomedical research and medical treatments. The argument about the name looks petty and nonsensical from there; if it were understood that when you say "CFS" you mean "CF", thanks to Oxford, it might begin to make sense. Somehow a line has to be drawn that doesn't include CF people in our research and treatment, and if there is any sense in the argument going on in the CPG, then that is what it is really about. The inclusion of the "CF" group, and the desire to separate them from "ME", is what is really driving this situation, I suspect.

    So I hope that "PWME" will try to bear in mind that in reality the difference between "PWCFS" and "PWME" is a name, and nothing more than that. If there are two distinct conditions ME and CFS, then you're plenty likely to have CFS and call it ME, and plenty likely to have ME and call it CFS - regardless of what the names are supposed to mean.

    And I think we are unlikely to make any political progress while the naming issue divides people with the same illness from each other, and divides people with the same interests and concerns from each other. If only we could all campaign together for some common goals we would have so, so much more weight. Could we not all campaign together for more biological research for both "PWME" and "PWCFS"? Could we not all campaign together for subtyping, the removal of the Oxford "CF" component from "ME/CFS", and the use of CCC in all research? Or full screening for undiagnosed conditions for all people with CF, ME, CFS, ME/CFS and CFS/ME?

    I doubt it, because my fear is that if we get close to agreeing on anything like that, some PWME will find something that the PWCFS can't agree with and make that issue more important than all the common goals. But I live in hope...

    Just one more attempt at finding some way we can campaign on a common platform. Can we all campaign for a 3-way subgrouping: CF, Fukuda ("CFS"), and ICC/CCC ("ME")? All research should then define, for each of its patients, which group they are in. Mixed cohorts would be fine if the ME subgroup were well-defined within the mixed cohort, and the ME results were therefore presented separately and compared with the CFS results. Mixed treatment centres would also be fine if all the patients were defined according to one of these 3 groups and treated with that in mind.

    There are legitimate concerns from the "PWME" argument. They are essentially the same concerns and interests as the "PWCFS" group, they just draw the line of definition in a different place and/or use different names. It's Russian Dolls: both are trying to argue the same thing but from a different perspective so that the argument seems different. The "PWCFS" don't want to be lumped in with Oxford-style "PWCF". The "PWCFS" hate the CDC's telephone cohorts and the loose definitions - it's just the same issue with different names and lines drawn in different places. There's nothing legitimate that the PWME are saying that the PWCFS don't understand from their own experience. So is there really nothing we can say to find a compromise that allows everyone to campaign on the same side? If not, then the only possible explanation would be a triumph of dogma, and my reference to Kinnock would be valid.
     
  7. Mark

    Mark Acting CEO

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    We have to find the sensible middle way here. Turn it round: How can we get solid scientific/medical knowledge if we study mixed cohorts? We have no more of a solid base for defining me, or cfs, by any criteria, than we have for dividing me/cfs. So we do have exactly that kind of weak foundation for everything already.

    Part of my answer would be that you can study mixed cohorts if you define who is CCC and who is Fukuda, and compare the groups. So you have "ME", "CFS" and "Control" in your studies. Then you would also be studying the differences and similarities between "ME" and "non-ME CFS".
     
    Valentijn likes this.
  8. ukxmrv

    ukxmrv Senior Member

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    We're not talking about the US here though Mark, though I do agree with the points you raised . We do realise that there is a large group of people with a "CFS" diagnosis in the UK that could easily have ME- pre CFS or one of the newer criteria. That's been clear from these threads. I'm sure that the ME patients at the XPG are aware of this as well.

    It's why we fought against the term CFS was the start.

    Personally as I have said before I'd see the function of any new clinic to treat ME as being able to diagnose ME (if the existing CFS people are interested).

    The specific issue here is the Scots XPG group. Talking about the USA just muddies the water. In the UK we have a historial group of people who have always had a ME diagnosis. It's going to be the same for some other english speaking countries like Australia and New Zealand where there always was a history of ME.

    This group of old ME patients has been campaigning for decades. We aren't going to go away until we all die off. My Uncle in Scotland has had ME for decades and would love to have a clinic to go to. He wants a XPG that represents him.

    It's up to the Scots XPG to agree what they campaign on. I'm told that the remit is ME. What we decide here on this thread has no bearing on what this group decides to do.

    For myself personally (as an old ME'er) I'd like to see the existing PWME compared to the new criteria before we make any decisions. I'd personally be prepared to consider some of the new "ME" criteria for the Scots XPG and any clinic planned.

    It's not up to me though to make that decision.

    What I have been hoping to do with my posts is to try and explain from the old pre-CFS ME patients point of view what possibly could have happened at the XPG at Scotland.

    Hope that the MEA and all parties sort this out and make a statement so it is clear.
     
  9. Firestormm

    Firestormm Guest

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    I shall repeat. I was diagnosed with 'ME' in the pre-CFS days. Big bloody deal. So what? My specialists knew only ME at that time. I still use the initials 'ME' when talking about my condition because I don't like the term CFS. Again. Big deal. So bloody what? I could add: Who cares? But clearly a small proportion of posters do. Hell, we don't even know if people 'out there' in the population even know the issues! I strongly suspect they do like I do - use the initials ME because they don't like CFS. Period.

    But we are here in relatively minute numbers posting on the internet when the massive majority are not. We can't assume very much. And I think it is largely about nomenclature - but if you prefer one name over another - then that must be applied to everyone equally. Especially when any attempt to scientificise ME is based as much on subjective symptomology as CFS is - indeed far less so when almost all science studies are based on CFS criteria.

    Anything less, and you will be rightly critiqued on your methodology - the criteria, the exclusion, etc. etc. When Bob above mentioned that PWME (words to the effect) wanted to see their condition lose it's attachment to psychological explanations and treatments - he was i suspect right for reasons perhaps he didn't intend.

    This is probably driving the notion that ME = more real and CFS = dodgy mental and that's a load of bull if ever I heard it. But how many times have we heard it? And despite those in the USA not having ever had a choice in the matter - and those in the UK post-2003 (?) invariably finding the two are taken to mean the exact same thing.

    As a small aside, have a look at the latest from Science Based Medicine. It's about PANDAs but, well, can you see any parallels here? I don't want to get into this one on this thread and I will post it separately if needs be, but take the opening paragraphs for starters. In some respects I felt it relevant here:

    I could add to the above that the 'specific diagnosis' referred to and if applied to our condition, would appear to necessitate a separate label and name. Of course the above article doesn't relate to ME and CFS and therefore doesn't take into account the potential consequences for all patients should such a policy be adopted through the pressure of lobbying groups given our current state of ignorance.

    I'd recommend a further read of the comments attached to the above and I don't want to drag into this the treatment and legal case surrounding the 16 year old child - although that too will be deemed to have parallels I suspect by some.

    n.b.

    There are no judgements being made here by me. I do think that for patients (see comments) there is a desire to essentially want 'more' when what is being offered has been tried and found wanting and I can and do empathise with that wholeheartedly.

    Not that that won't stop impressions being made about my willingness to post the above. C'est la mons vie.
     
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  10. Mark

    Mark Acting CEO

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    I think they are aware of this too, which is why I'm waiting to hear that side of the story and see how the politics plays out before forming a firm opinion on what happened.

    This is a thought-provoking point. I would put it like this: A campaign focused on demanding that any clinic must understand and be able to diagnose CCC/ICC, must understand the immunology and neurology, etc - in other words a positive campaign for positive goals - probably has a very good chance of success in Scotland. A campaign focusing on demanding the removal of a group of patients from that clinic system, without proposing a specific alternative for those patients - a more negative goal - seems doomed to failure. I'm not saying that's what happened here, but that's the gist of what I would recommend: unequivocally positive goals rather than arguably negative ones.

    I think most of the people on this thread are from the UK, it's true. But in the wider discussion, the US/UK issue on the naming is always a big factor. The historical ME group have every right - and they are right - to insist on keeping ME as their name rather than CFS, and also right to campaign for tighter criteria than Oxford or NICE. But it doesn't seem thats how things worked in this XPG vote; it seems to have ended up getting formulated more negatively, so came at things from the wrong angle. Making a campaign positive rather than negative doesn't mean changing your aims, it means rethinking how you apply those aims and how you can make your stated goal a positive one and a hard one to argue against - an achievable goal. Perhaps in this case it would have meant campaigning for Fukuda instead of NICE, or campaigning for a new and separate ME group rather than removing patients from the existing group. We don't have good details on this particular case, so I can't be specific, but that's my general point.

    And this is what worries me really, because a campaign that long-term inevitably acquires dogmas and rigid ways of thinking that make it entrenched and difficult for others to engage with, and the group loses the ability to adapt. I don't want to polarise this and it's not clear exactly who we're talking about here, but if we're talking about the more aggressive and dogmatic "ME is not CFS" end of the argument that I've seen from time to time on this forum, then frankly if those people can't even convince the "PWCFS" community, many of whom actually have ME and the rest of whom are similarly sick with similar concerns and considerable knowledge of the subject, then what chance do they ever have of convincing anyone else?

    True enough - we're just chatting here. But of course we're all connected, and what happens in one country affects everyone else, and we're well capable of supporting each other if we can come up with united fronts to campaign around, which would give us all a lot more weight.


    Sure, and actually I do think there's a need on this thread to try to guess at an explanation for the side of the argument that we aren't hearing. Unfortunately we're all fishing around in the dark here and guessing what might have happened, and I suppose that implies a risk that we resort to our prejudices about the issues. I'd love to see some info from the TYMES trust or the 25% group or anyone who voted for this - surely there must be something about it somewhere on the web?
     
  11. Firestormm

    Firestormm Guest

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    Until our anointed representatives and others (all with good intentions I'm sure) stop talking about the nomenclature (either of which may continue to prove inadequate), and sub-categories, without accepted evidence (and not more hypotheses), until we stop reacting to psychological pontifications that keep these things as 'key issues' - our condition's progress will continue to stagnate and 'we' will remain being seen as defensive.

    CFS/ME is a damn silly thing to have to type all the time but it's where we are now. High time we all got behind a united front and stop trying to impress with one-upmanship until science and medicine are better able to explain what is happening to us with perhaps biomarkers. I mean let's face it even those who consider themselves different, could very easily be shown not to have (or not to have to the same extent) any one (or more) biomarker that is produced - including perhaps muscle response to exercise.

    p.s.

    Mark, you mentioned above that the NICE criteria were Oxford. Is that right? Only I can't remember. I do know NICE of course and happen to think it better than Fukuda. Indeed (aside from divergent arguments about it's broadness), if properly applied, and other alternate (including likely psychological/psychiatric) conditions being eliminated, it's probably the best clinical criteria being used at present.
     
  12. Mark

    Mark Acting CEO

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    You know what, I have asked many random people now what they think of the names, and what they know about them. Not a single one has heard of CFS or ME/CFS. Everyone has heard of ME. ME is still the de facto name in the UK, which I think is a positive thing.

    Far too often. Once is too often. As soon as I hear somebody talking like that, I might as well be talking to a Wesselyite. For the person who self-identifies as CFS - for whatever reason - any person making that argument is treating that person exactly the same way as the Wessely School does. It's inexcusable. In the political spectrum, the far end of the ME argument is allied with the Wessely School in just the same way as extreme left and right wingers are all totalitarians at heart. The majority of patients are squeezed in the middle and attacked by both these extreme points of view.
     
  13. ukxmrv

    ukxmrv Senior Member

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    Mark, there was information on the 25% groups facebook page which I saw at the time of the original XPG meeting. Firestormm kindly trawled through Facebook and posted it to this thread. If you hunt back through his postings you'll find it.

    Now lost count of everything as it was a few weeks ago when the meeting was held and this thread only surfaced because the MEA reported in it.

    Personally I have enormous sympathy with people who have a general fatigue label as I saw that happening to someone close. That's where the mutual respect needs to come in. We'll hear disparaging things about the mentally ill or the unknown ill from members of every group at times. Not every one thinks the same on every issues.

    The othes side of the coin are the mentally ill who attack ME patients (i.e. I'm faced up to the stigma of being mentally ill so why don't all those ME patients) which I have met in person, in the media etc.
     
  14. Mark

    Mark Acting CEO

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    Whether NICE and Oxford are quite the same seems to me to be a confusing question when you dig into the detail; Dolphin has as good a handle on it as anyone. My recollection is that 'Oxford' is hard to pin down because some of the original documentation is not available, but I think I may be confusing Oxford with London there. :rolleyes: The way it seems to me, is that NICE is quite similar to Oxford but with the wording loosened in a very significant way. But my impression may be wrong.

    Anyway, I can't imagine any worse criteria than (my reading of) NICE. Last time I looked at it, it seemed to boil down to "unexplained persistent fatigue for more than 6 months, with one or more of a long and broad list of criteria...where that list of criteria includes headaches, PEM, sleep problems...". So for me, NICE = "unexplained fatigue for 6 months", basically. It might as well be a definition of "undiagnosed"; it's ludicrously broad. I can't imagine how you think it better than Fukuda. Do tell me what in the NICE criteria would restrict diagnosis beyond "unexplained fatigue for 6 months" - perhaps I missed something.

    I suppose maybe I focus too much on the inclusionary criteria rather than the exclusionary criteria. If everything else were properly excluded, surely Fukuda is a bit tighter and thus a bit better? It seems to be at least beginning to describe the symptomology I think of as associated with ME, and requiring multiple symptoms.

    I just had another look at the criteria, and what strikes me is that what is characteristic of what I understand to be 'ME' is basically having everything on those lists, and more: my definition would be more like that. Pretty much everything on those lists could just be a regular cold or something, on its own, and I imagine that most people have experienced most of those symptoms from time to time. For me, at my worst I had them all for several years, in new and unfamiliar forms and with greater intensity than I'd previously experienced (now I just have a few). Fukuda requires 4 of them. NICE requires 1. Neither are strict enough to fully describe my illness, but I prefer Fukuda.
     
  15. Holmsey

    Holmsey Senior Member

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    Hi ukxmrv, I've made the point througout this thread that there is no such thing as an ME diagnosis, I've even gone as far as to include excerts from the ICD10 coding manual. There is no test for ME, it's not even a subjective opinion for now because we have no accepted definition of what ME is, for now whether you and Bob like it or not ME = CFS = ME/CFS both in the eyes of the NHS and the Government.
    If that's where the dislike is then that and not treatment centres should be the focus for these groups.

    It absolutely is not, I'm arguing that even if there is a difference we don't YET know what that difference is beyond conjecture and opinion.

    Fine, then I'm with Firestorm, calculate the real numbers involved in that illness rather than having your cake and eating it, I for one as a taxpayer what to know what the incidence of this illness is when seperated from what YOU and THEY say is a different illness.

    And here we have it is, the true predjudice hiding within these pages, you think CFS = fatiguing conditions, you think ME is real while CFS is where the psyc cases hide, while in reality CFS is just a label a doctor who doesn't beleive in any difference applied when the criteria he was instructed to use was applied.

    Reality v desperation.

    You know what, I don't think that's what was sold to those MP's but I'm going to check, over the comming weeks I'll be mailing every last one of them for clarification on exactly what it is that this group is about.

    Well ukxmrv, given their name and the diagnosis that appears on my notes dispite my symptomology, then clearly don't represent me, I don't have ME, I have that other illness that most of the research referrs to the one you think is in the same bucket as fatiging conditions.
     
  16. ukxmrv

    ukxmrv Senior Member

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    Someone chose to use the term "fatiguing conditions" in relation to the vote of the XPG. It's not my choice or my belief. It was whoever decided this for the XPG. Suggest you take it up with them if you have a problem with it.

    None of my posts reflect the beliefs attributed to me in your post.

    It may be your opinion that ME there there is "no such thing as a ME diagnosis" but there are still thousands of patients still alive with that diagnosis from Ramsay or a colleague from the period. It's your opinion but it's not going to convince patients who were lucky enough to see a ME doctor when they were still alive and practising.

    These patients have every right to continue to fight for representation at the XPG and for treatment by doctors who understand their conditon. Also the new patients being dx'ed with the newer criterias for ME.

    I have no interest in representing anyone. If you have another diagnosis on your records and you are happy with that diagnosis then set up an XPG for that illness if the ME XPG doesn't represent you.
     
  17. Holmsey

    Holmsey Senior Member

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    Sorry Mark, but you're just falling into the same devisive trap. We have an undefined illness, forget the 2,500+ papers which list abnormalities some of which one group may have and another group may not, we still have an undefined illness in the OFFICIAL and therefore POLITICAL sense.

    The only people who don't have an undefined illness are those who are missdiagnosed, and it doesn't matter whether, in having been placed in the 'undefined' bucket if they were told that bucket was for ME, CFS, ME/CFS or CF, they all have the same illness until they have a defined illness.

    The reason I say this is that to have an undefined illness you can't have one that's known, so for instance, if it can be shown that you've suffered some mental trauma, and by addressing that trauma with psycological treatments your fatigue gets better then clearly, if you were told you had and of the above that was a missdiagnosis. Likewise if a test is done on your adrenals and you actually have Addisons then you were miss diagnosed.

    For the rest, where there's no missdiagnosis and still there's any group of symtoms within the symptom group then you've as much right to be here and represented as anyone else, regardless of what you call yourself, or anyone else calls you. You have the undefined illness know under ICD10 as ME/CFS.

    This is the illness I beleive these MSP's were involved in a CPG to discuss, not some self selcting subset or any aboration of historical missunderstanding.
     
  18. Holmsey

    Holmsey Senior Member

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    IMO if you're argument consists of supporting the medical establishments past views, then you have to consider their current views, and the current establishment view is that ME = CFS = PVS, and if you ask them why the change they will point you at as much evidence as you can point them.

    MSP's follow the prevailing expert view.
     
  19. Bob

    Bob

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    Some developments:

    Mary Fee resigns as CPG convener
    http://www.actionforme.org.uk/get-informed/news/scottish-hub-news/mary-fee-resigns-as-cpg-convener

    18 October, 2012
    Campaigning MSP Mary Fee has resigned from her position as Convener of the Scottish Parliament’s Cross Party Group on M.E.
    Her decision to stand down follows the earlier resignations from the group of Deputy Convener Siobhan McMahon MSP and fellow MSP Elaine Smith.
    Sonya Chowdhury, Chief Executive of Action for M.E., who attended the most recent meeting of the group, said: “At Action for M.E. we were saddened to hear of Mary's resignation and would like to put on record our appreciation of all the hard work that she has put in on behalf of people with this terrible illness.”
     
  20. Esther12

    Esther12 Senior Member

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    I don't know about that. Doesn't White think that lumping together PVFS into CFS was a mistake (he doesn't seem that concerned about it, but I thought I'd seen him claim that elsewhere - could be wrong)? There was that study from Wessely and Chalder in the early 90s which lumped together loads of infection, and Oxford CFS and found no association, and that led to a period (sadly still ongoing, despite the evidence) of people believing that patient's claiming that their fatigue started with a viral infection simply indicated that they were trying to avoid acknowledging their emotional problems... but we quite rapidly found out that it was simply a badly designed study, and that if there was any desire to find an association it was important to focus upon those specific viral infections which had been reported as risk factors - as was then done with EBV, and then an association was found.

    Perhaps this has some relevance to the general discussion of splitters vs lumpers:

    Sometimes one just needs to take a guess as to where the split should be made, and doing so allows more meaningful data to be collected. One could say that we had no good reason to focus on EBV over other viral infection, other than anecdotal evidence - but it provided us with more meaningful data. 'CFS' by any definition is a somewhat arbitrary split, there will always be patients who just fail to meet the criteria, and those who just do - I think it would make more sense to split things up more, in the hope of this leading to more meaningful understanding as to what causes different patient's health problems.
     

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