1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Cross Party Group on ME

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

  1. Bob

    Bob

    Messages:
    8,851
    Likes:
    12,406
    South of England
    I think there have been some small but significant breakthroughs over the past couple of years, Esther. Such as the quite large private funding from the CFI; the new FDA interest; and the new biomedical funding mechanism at the UK's MRC. Even the CDC seems to be taking diagnosis seriously, with their ongoing project (even though not everyone is happy with the methodology they are using.) And new high-profile researchers have come into the field: e.g. Levy & Lipkin.

    I think the changes are incremental, but I think you might be right that the situation won't change in a major way for patients until there is a major research breakthrough.

    I'm not sure it could ever be completely unified, because there's a lot of politics involved, and some very entrenched opinions.

    But I usually find that when people make an attempt to discuss opposing opinions in a supportive way, on the forums, that they soften their attitudes towards each other. It's not always the case, of course.

    A project that I'd like to get going would be for patients to collate a list of the strongest, most impressive, and most repeated, biomedical research. There's a heck of a lot of biomedical research out there, but I've never seen it categorised, except for Margaret William's comprehensive immunological research list, listed by year.

    I've not seen the biomedical research systematically reviewed either.

    Maybe I've missed some important resources though.
     
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,383
    Likes:
    5,882
    Okay, you got me - I can tend to forget about those sorts of things. Those are slow, maybe no, pay-off things which are unlikely to affect how patients are treated soon, but they are still hopeful signs that things may be changing higher up. What I really want is to have those who have made misleading claims about the efficacy of the treatments they provide for CFS to be removed from the NHS - and this sort of accountability is not something the NHS, or UK medical culture generally, is likely to be open to.
     
  3. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Well as I hope has been demonstrated or at least hinted at on this thread, the reasons for any 'opposition' to a name change are many and complex and I don't believe that the majority of people with my diagnosis - afforded under NICE and appended to their medical records as either CFS or ME - or prior to this time; are totally aware of all the issues. I further think that when - as in the vote above - people are not made aware of the issues when being courted for their vote or support it can appear more simplistic than it really is and could lead to consequences that are being hidden and could, as they say, "bite us in the arse".

    One thing that having this diagnosis has brought home to me over the years is never to cling to a belief or notion without accepting that I don't know everything. Of course keeping an open mind is important and not always easy when we feel the need for something concrete upon which to stand and stake our claim. Neither is it even possible when being confronted by events that require a stance to be taken. I just think that to cling to a notion, or a e.g. certain 'expert's' opinion, is courting problems especially if you are not open to taking on other points of view or information that you haven't even considered (or are prepared to consider because "it's too darn confusing".

    But that isn't always possible. Especially on forums or when being asked to "assume the position" and/or "vote" on complex issues that by (someone's deemed) necessity gets boiled down to a 'yes' or 'no' ('in' or 'out') ('for' or 'against') (independence for Scotland, or continued unionist isolation ;)), (myalgic encephalomyelits without aetiology) etc. etc. All of that is made infinitely harder when on forums etc. for this condition when one associates with other (presumed) patients and their carers, and when taking a view that is deemed to be 'against' the common thought.

    We are where we are and I don't think there's any going back and attempts to (whether meaning to or not) divide the population of patients with this diagnosis - based on subjective symptomology - is in my opinion 'nuts'. We need more criteria like a hole in the head. Cherry picking rules and allows ever more 'experts' to not only pick and choose their research; but also to pick and choose what they think constitutes "ME" and that include (assumed) patients themselves: the olde "I know I have it and I don't believe you do" meme.

    Anyway, I did ask the MEA what had happened to their summary, and am waiting a reply. Be interested to know if this vote was really about a 'name change' or if it was more concerned with the 'fatigue clinics' and who/what they would be treating. I have a suspicion that for some folk it is the very thought that "ME" affected people ought not to be treated at such places that was most important. That it is there opposition to GET and CBT etc. that perhaps brought the vote. But I am only speculating and reading between the lines here (to some extent).
     
  4. Holmsey

    Holmsey Senior Member

    Messages:
    286
    Likes:
    108
    Scotland, UK
    Hi Bob, sounds like a lot of work, but never the less achievable, of course you have to have a reason to do it in the first place, given it's a lot of work. You could do it to post on line, but that's preaching to the converted so really you'd be wanting to target policy makers.
    You could go for clinicians or researchers but they tend to follow the money and the money holders tend to be the politicians, the big money at any rate.

    So, what you would want to do along side the research work is reach out to willing politicians, convince them there's an injustice going on and that the subject matter needs closer examination. I'd imagine in the first instance you'd meet with scepticism and would probably need a softly softly, one step at a time aproach. Staying calm, sticking to know fact and not overstreatching your demands would probably be the best approach, get them on board, let them see we're not as we're regularly portarayed in the press. The safer they feel the more success you're likely to hvae in making your other work worthewhile.

    Of course that's exactly what this thread is about is it not?
     
  5. Holmsey

    Holmsey Senior Member

    Messages:
    286
    Likes:
    108
    Scotland, UK
    Another poorly thought out demand, how can anyone claim to be both multi-cultural and nationalistic at the same time, left wing facists, they'll be calling themselves Liberal democrats next!

    Totally off subject but if any thread needed lightening up then it was this one, thanks Firestormm.
     
  6. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    He he he :)

    Hey, you know at the end of the day (or after many days) decisions must be made. I just wish that more people were involved and more of those people appreciated more of the issues is all. A simple 'yes' or 'no' without awareness of the likely consequences could potentially cause more trouble than maintaining the "status-quo" (assuming of course that is what you/we have at the moment).

    And I do mean that specifically to the topic at the start of this thread (as well as to Scotland and 'ME/CFS' or independence for that matter - which would actually amount to the same thing!)

    p.s.

    I also have a slight issue with national (largely English) charities doing anything more than abstaining from said vote. Appreciating that I have very little knowledge of a) what the exact vote was based upon; and b) what this group was all about.

    Edit:

    Let's assume for a moment that ALL medics who diagnose CFS/ME employ the NICE criteria (without necessarily dipping into their own experience); let's also assume that NICE were persuaded to drop the 'OR' when it comes to PEM being a prevalent symptom; and instead made it 'AND'. Would people then be more or less happy (those that have any opinion on the matter)?

    I doubt it because those that do have an issue have an issue with the nomenclature and a preference for Myalgic Encephalomyelitis over Chronic Fatigue Syndrome or a hybrid, meaning-the-same-thing-to-all-intents-and-purposes: CFS/ME. And that's even before we get to Myalgic Encephalopathy or Post-viral Fatigue Syndrome (the latter at least largely kept all those with a viral trigger together and the former would be my own personal preference but hell like I could give a rhesus monkey either way - we're only talking here - chewing the cud).

    Had the change of name been adopted, then those who are motivated (for whatever reason) to promote 'ME' over 'CFS' given the current state of play would undoubtedly in my view have seen this as a victory and taken it wholly out of context.

    So aside from the actual basis of the 'vote' being taken in the OP I think it is perfectly reasonable to ask what the motivations were behind those who chose to vote 'YES' to what appears to have been a name-change and what consequences (if any and I obviously think there would be some notable and possibly devastating one) there could be should such a decision have been permitted to happen.

    So, yes, based on the scant information we have in the thread, the politico's made the right decision. I just sincerely hope it doesn't send them running for the hills and shoving 'CFS/ME' right down there on the list of priorities - because Scotland was being seen as something of an area of interest and things were seen as getting done up there.

    Of course being in my adoptive county full of Cornish; I hadn't really paid all that much attention to what is happening at the other end of the country. Kind of wish I had now. Or maybe I did and I can't remember? And that's another problem with any advocacy with this particular patient population. Cognitive dysfunction sucks!!
     
  7. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    I’ve already replied to you to state that, it is not my contention that : “ 'ME' and 'CFS' are no different “, and nor is it merely a matter of lack of evidence – it is a lack of any rational basis on which to distinguish between two diagnostic classifications that are both arrived at by exclusion of (currently) knowable aetiology. Using limited variation in the gross symptomology of the two classifications as a differential measure is akin to taking two buckets of seawater and claiming to be able to distinguish between the two on the basis of the waves that were evident at the time each bucket was taken from the sea. Subsequent analysis may show that there is indeed a quantitive difference between the contents of the two buckets, but the relationship to the observed waves could only be demonstrated on the basis of the subsequent analysis – fine for an hypothesis, wholly inappropriate for a priori definitive statement.

    But this avoids the whole point of this thread – which is about advocacy. What relevance has an argument about diagnostic criteria got to do with MSPs ? They are in no position to affect how medical professionals choose to diagnose or classify illness, indeed the tradition throughout UK politics is that politicians defer to experts. Putting politicians in a position where they are being asked to adjudicate on something that is outside their acknowledged limits of responsibility, just serves to **** them off.

    Certainly what to do in a particular situation is a matter of judgement – in the case in question some M.E (not CFS apparently) advocates made some abysmal judgements based on heaven knows what, the effect of which appears to have been the alienation of politicians who had previously given a indication of being supportive. In my view that is an epic fail of judgement that ought to serve as a lesson to the rest of us.

    Not my argument – but the confusion seems inherent in the whole question, which is why it is inappropriate to have rehearsed in a political context. Advocacy is necessarily a pragmatic process, we currently have a pragmatic nomenclature – M.E/CFS. To have involved politicians in something which to the politicians’ perspective would have excluded people who they considered to be of concern within a particular context, and in so doing alienate those politicians, is not pragmatic.

    As a discussion amongst M.E/CFS affected people all that is fine, but it has no relevance to a forum of advocacy that involves people who ‘we’ are trying to get on ‘our’ side. It’s self absorbed, self regarding and arrogant to believe that politicians or anyone else that is in a position to effect change in terms of anything ‘we’ would want ( research, treatment, benefits etc) will have any interest in the minutiae of M.E/CFS debates.

    In this case I think it’s likely a matter of failure to understand the limitations of particular advocacy arena and to consider the audience. The name isn’t the issue, people can conclude what they like but the issue in this case is what in the context of advocacy, can actually be achieved and what is it that is necessary to ensure that. As to why in general it’s an issue that people get exercised about, I don’t usually speculate about people’s motivations or unexpressed thinking and prefer to go by what has been said/written. I do think a deeply unhealthy ‘default’ has developed within M.E/CFS discourse, where the illness has to be kneejerk defined as ‘not psychiatric’, and the M.E – CFS antagonism follows from that. The irony of course is that by saying every time “M.E – not psychiatric illness” it actually raises the unnecessary question of whether or not it is a psychiatric illness.

    Now – I’ve answered all the questions you’ve posed to me in this thread – how about you acknowledge just one that I put to you:

    the point is if your argument is that M.E and CFS are different, then you can’t claim the 1:240 people affected. In which case in the Scottish context it’s not 20,000 people but a lesser number – so what is that number ? 10,000 ? 5,000 ? just 1,000 ?
    This isn’t academic; if ‘true M.E’ only affects a much smaller number of people than is currently claimed in most advocacy contexts – then not only does that reduce the power of any demand for research investment, it also introduces a question over the validity of current advocacy.

    IVI
     
  8. Holmsey

    Holmsey Senior Member

    Messages:
    286
    Likes:
    108
    Scotland, UK
    Where Independence is concerned I fear that rabble rousing and a poor understanding of history will have a larger impact than awareness. Kilt's were an English invention, see how long you'd last in a Glasgow pub spouting that one and yet it's true.
    As to our current predicment, decisions do have to be made, but this particular decision didn't have to be, as we've established in this thread there is no 'ME' v 'CFS', a broken leg is a broken leg, cancer is cancer, various flavours but still the same disease. We don't know what we have yet, we don't even know what area or medicine it belongs to, immune, nuro, active virus, there are proponents for all.
    That's what makes it such a waste, even if the group continues is the same enthusism or trust which has been extended toward us in the past going to be there, and if it wasn't ever there then why not just walk away rather than stage a vote as a pretext.
     
  9. Bob

    Bob

    Messages:
    8,851
    Likes:
    12,406
    South of England
    If I've ever simply asserted that "ME and CFS are different", then I've misrepresented my opinions.
    That would be a vastly over-simplistic, misleading, and unhelpful assertion to make.
    So I hope that I haven't claimed that in this thread.

    In my personal experience, there are usually far more similarities than differences in the personal experiences of patients. Having said that, I do know a number of patients with quite difference symptomatic experiences, and subtly different opinions about the nature of their illness.

    My intention in this thread was firstly to point out that the proceedings of the 'CPG on ME' were possibly being misrepresented, and secondly to try to explain the (honest) motivations of people who wish to see a change in the nomenclature. I think I've failed with the latter.

    Like I said earlier, I tend to sit on the fence when it comes to nomenclature, because I'm aware of the very strong feelings and opinions about it on both sides of the debate. And I have total sympathy with both sides. For this reason, I don't like to see one side attacking the other, simply because they don't understand the other side's (honest) motivations.

    My own position is that research should be carried out on very well-defined and exclusive sub-sets, and that CFS/ME patients should stop being treated as if they have a psychological disorder. Of course, if any CFS patients do have fatigue as a result of a psychological disorder, then they should be appropriately cared for, as well as all the CFS/ME patients who have a biomedical illness.

    My strong preference is for CFS/ME to be treated and researched as a biomedical illness.
    Yes, this might exclude a small number of patients with a psychological basis for the fatigue, but I personally believe this number would be tiny, if any. And in any case, it does such patients no benefit to be lumped in with a different illness, and they need appropriate and focused treatment.
     
    Valentijn likes this.
  10. Bob

    Bob

    Messages:
    8,851
    Likes:
    12,406
    South of England

    I hope to drop out of this thread soon, but before I go, I just want to try to explain one more thing that maybe I haven't been successful in communicating...


    Holmsey, I do understand your concerns.

    But I wonder if you might possibly be misinterpreting most patients' motivations re the nomenclature.

    My knowledge of CFS/ME patients, and patient organisations, tells me that most patients simply want CFS/ME to be treated as a serious biomedical illness.

    And I'm absolutely certain that this was the motivation for the vast majority of people who voted at the CPG on ME. Their motivation was just to get the illness/es treated as a serious biomedical condition.

    From the perspective of most of those involved in the vote, I'm certain this is not an issue of exclusion, but it's an issue of proper treatment for all of us, and there is no intention to exclude people because they don't quite fit any particular definition.

    So, based on the wishes of most patients, if the vote was followed through, you would be included, and Firestormm would be included, and I would be included, because we have a biomedical illness of some sort. I can't be certain that that is how it would go forwards, because I'm not involved in the process, but that's how I see it, based on my current experience of these issues.

    The issue re nomenclature is partly a reaction against the psychiatric lobby. But it is also related to the way that 'ME' has been hijacked by vested (CFS) interests. And it's also about getting CFS/ME treated and researched as a biomedical illness.

    I know that there is a section of patients who want 'ME' to be defined by specific exclusive criteria that many patients haven't even heard of, but they seem to be a minority. (That's not to dismiss their opinions - I think all opinions are a helpful part of the debate - And all honestly held opinions should be considered.) But the patient organisations that have been mentioned in this thread do not fall into this category, as far as I understand, and just want CFS/ME treated seriously.

    So, my experience tells me that, for most patients, the main issue is predominantly one of removing CFS/ME from the hands of the psychiatric lobby. Although, I acknowledge that it goes further than that for some.

    I honestly think that most of us want exactly the same outcomes. But because it is such a vastly complex and emotive issue, involving a mixture of personal experiences, politics and science, then the language we use sometimes alienates other people, unintentionally. I've always found that once people understand each other's motivations and fears, regarding these issues, then the disagreements become far less fractious.

    Of course, we still don't know exactly what happened at the 'CPG on ME'. It looks like it's more complicated than simply a disagreement about names.
     
  11. Holmsey

    Holmsey Senior Member

    Messages:
    286
    Likes:
    108
    Scotland, UK
    And so they alienate those few politicians who were taking it seriously, I'm lost how does that work?

    My whole point in this thread is that we've sacrificed something worthwhile, something tangible for an indefensible ideal, an intangible notion with no scientific background as if by insisting one name we've been given is 'better' than another when actually what we want is real understanding, for us and for them.
    In the way of 'I think therefore I am' I'd suggest 'We're ill because we're not well', not because of a name, and if insisting on one name runs the risk of leaving one patient in the real world then it's simply shooting ourselves in the foot.

    I don't want to be represented by anyone who thinks the way to do that is to end any dialuge, I want to be represented by people who are 9 times knocked down and 10 times standing.
     
  12. user9876

    user9876 Senior Member

    Messages:
    793
    Likes:
    1,944
    Slightly off topic but I think there is a really key issue issue in defining people with ME, CFS or what ever you wish to call it which is the quality of the diagnosis. There have been a number of papers suggesting misdiagnosis rates with GPs of around 50% with sleep disorders, psychological disorders, endcronological disorders and so on.

    So without better diagnositic guidelines there is a real danger that a ME or CFS label becomes an over general label for people with ME and people that a doctor didn't think about enough. Which obviously causes mixed messages around care, treatment, research etc. It does make me wonder if better defined differencial diagnosis protocols are necessary both to define who has ME and to help those misclassified who have other treatable illnesses.
     
    Bob and Holmsey like this.
  13. Holmsey

    Holmsey Senior Member

    Messages:
    286
    Likes:
    108
    Scotland, UK
    Accepting the current mess, and offering that no one was to be excluded while making this point and asking that the recommendations already made in Scotland were taken forward or further debated until some acceptable shift could be made would have been a great us for this group.
    Belligerence may feel good or give you bragging rights but it's no substitute for real progress.

    In the end maybe the dissolution of this group will allow a different set of representatives to come forward who understand compromise and it's role in achieving your goals.
     
  14. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    This is true and I have used both pieces of research myself in various settings, but of course we don't know whether the specialists concerned stuck rigidly to the NICE Guideline and/or applied their own expert knowledge when diagnosing (and neither do we know what alternate diagnoses are made generally - we assume that in general practice these get missed but we don't know for sure).

    What I mean to say is - as I intimated above (somewhere today) - we can tighten up on GP/Specialist knowledge but at the end of the day we have little control over who does/does not adhere to any Guideline that uses criteria and/or recommends alternate diagnoses.

    There is another (probably more) twist to this, and that is reassessment. Once a person has this diagnosis - let's say using the NICE Guideline - then there seems to be very little guidance relating to reassessment over time. There is also a further assumption that doctors (as well as patients) will seek to diagnose/assess newly presenting symptoms that could be a co-morbidity, but that patients and doctors might presume are part and parcel of their primary diagnosis - given that little is known about it's effects.
     
  15. Bob

    Bob

    Messages:
    8,851
    Likes:
    12,406
    South of England
    Have you found some new information about what happened?

    Well, I'm not sure that the evidence supports your opinions.
    The research evidence relating to 'ME' goes back many decades, so there clearly is a scientific background.
    Whereas, the research evidence relating to 'CFS' goes back to the 1980's.
    It could be said that the research evidence relating to 'ME' is as strong as the evidence relating to 'CFS', if not as current.
    And it could also be said that research into 'ME' is more appropriate because it is more likely to define a discrete disease.

    Yes, I agree. That's why some people want to use the term 'ME'.
     
  16. Bob

    Bob

    Messages:
    8,851
    Likes:
    12,406
    South of England
    Yes, that's a sensible area to focus some of the resources of the NHS CFS/ME clinics, in my opinion.
     
  17. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    A rather good write up I thought from ME Research UK including the two studies mentioned above: Autumn 2012: http://www.meresearch.org.uk/information/publications/misdiagnosis.html

    If the previous comment on the 25% Group's Facebook page was correct, then the objection (and vote) was for specific ME clinics of course and not, presumably, the 'fatigue clinics', seemingly being proposed elsewhere. Again one has to ask if it isn't the name alone that is being objected to - if so then that also seems rather silly - providing of course you have medical specialists in place capable of ensuring a correct diagnosis: who cares what the name of the clinic is?
     
  18. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,530
    Likes:
    2,081
    London
    There is also a large body of patients with ME pre-CFS and I'd say that some of the pressure to keep the two seperate is coming from there still.

    I don't have the figures for pre-ME cfs but have a feeling that I saw this in some of the 1980's press articles. It must be / have been a sizable group with many people still alive (like me).

    The article by Sue Findlay in 1986 was reported as getting 14,000 requests for a factsheet. Some of these people were sure to have gone on to a ME dx by one of the doctors experienced in the disease then.

    (quote)
    The emergence of ME

    On 1 June, 1986, the Observer newspaper carried a feature entitled ‘A disease doctors don't recognise’. The author, Sue Finlay, wrote of her disabling illness, which she named as Myalgic Encephalomyelitis (ME) or post-viral fatigue syndrome. (It is now also widely known as chronic fatigue syndrome, or CFS.) She described her symptoms - exhaustion, extreme muscle weakness, joint pains, mood disturbances, deteriorating eyesight, vague stomach problems - and related her long and frustrating search for a diagnosis, and thereafter for medical help. She claimed that thousands of people in Britain shared her predicament, enduring years of physical misery while doctors ascribed their problems to ‘nerves’. Readers were invited to write to the Observer for a factsheet; over 14,000 people responded, and a year later, Sue Finlay was receiving over 200 enquiries a week (Observer, 2 August, 1987). It was the beginning of a publicity campaign which would make ME a household name, and in the course of which it would become the subject of heated controversy about its nature and significance.

    http://www.medicalsociologyonline.org/oldsite/archives/issue41/pdwolfe.html

    (end)
     
  19. Holmsey

    Holmsey Senior Member

    Messages:
    286
    Likes:
    108
    Scotland, UK
    Hi Bob, from the post prior to this you ask if I have any new evidence because I suggest that an opportunity has been squandered and MSP's 'alienated'.

    You've been asking such questions since first joining this thread as if things are being missrepreseted or exagerated here. I've taken the original posting at face value and invited you to provide an alternative if you beleive or know that the original post is erroneous in any way, you continue to post as if it were, but unless I've missed it you've offered no alternative account?

    In the absense of any such alternative evidence then we can only discuss what is in front of us, in that account an opportunity has been squandered and MSP's have been alienated.

    As to the above comment, yes that would be a sensible area of focus, and presumable the MSP's envisaged this as being a way to seperate ME and CFS, before implementing best practice treatments for either. That is of course presuming agreement could be reached by attending clinicians on how to seperate the two, something which seems would have been a good area of focus ahead of the clinics being opened.

    But, and again I refer to the origninal posting, it seems certain group attendees wanted only ME (whatever that was agreed to be) to be dealt with, so your centres would be ME clinics, not CFS/ME clinics. This raises an interesting question as to how in general practice ME patients would be found for referral without similar diagnostic guidlines and that's a massive change in culture. I'm not sure how your GP would respond but I'm pretty sure mine would want me re-assessed against those new guides.

    Of equal importance for me would be the view of these groups on where anyone referred and subsequently deemed 'CFS' as oposed to 'ME' would 'appeal' that decision, since it would seem to be 'opinion' based and result in 'no treatment' by that specialist centre. As has been pointed out CFS may be the majority illness post seperation, presuming we're ever at a point where they are seperated. It would seem even from the name, the 25% group already beleive they are the 'minority' illness.

    That standpoint of course, thinking like an MSP for a moment, makes me wonder if we shouldn't first be opening CFS clinics specialising in whatever CFS turns out to be, if there are more of those with equally debilitating symptomology.

    It just gets more ridiculous everytime I write about it, I'd honestly laugh if it weren't so deadly serious.

    Regards,
     
  20. Bob

    Bob

    Messages:
    8,851
    Likes:
    12,406
    South of England

See more popular forum discussions.

Share This Page