The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

The Fight is on...Imperial College XMRV Study

Discussion in 'XMRV Research and Replication Studies' started by George, Jan 5, 2010.

  1. Katie

    Katie Guest

    I've got one nice chunk of practical value - science. XMRV positive people in the UK are going to be so valueable to the likes of Dr Kerr and possibly even Dr Gow, it links what's happening in America to this fair isle where McClure can catagorically state XMRV is not here. Well it is. We have three of those people active now and another two active members awaiting results, this includes myself.

    Politically and scientifically, XMRV testing is needed here. My paying to have it done is my donation to the cause. It may not pan out but then I haven't given up a meal to have it done, just a week or two of crap health.

    It may not have material value to me, though I am considering trying eastern approaches while western medicine catches up as it's not hurt me in the past, but it could have a heck of a lot of material value for us as a whole community of sufferers. While the value remains unknown, it needs to be done if any effort is going to be made to find out in this country.

    I have my personal reasons also, I've had ME in my life since I was 11 years old and I'm turning 25 this year. It's oh so tempting to find that Big Answer for everything, but I've gone into this with eyes wide open. As soon as I've got my results, I can then decide what to do in regards to getting involved in some studies. I've already done some research in that area and if I'm positive I should be hot property ;) It's all for the greater good.
  2. Robin

    Robin Guest

    Very well said, Rachel. While I understand the depth of flex's frustration, I agree that positive encouragement is the way to go.

    Regarding the joking threats of violence: I think it's a natural reaction, especially for men, to respond to any injustice with the "if he ever stumbled across ME in a dark alley watch out, ho ho ho" type of joke. It's a form of venting, not intent, and I wouldn't worry too much about it.

    SERIOUS threats on the other hand, of violence against people whether they be toward psychiatrists or anyone on this board are not OK here. A serious threat would be "I'm going to go to London and find Wessely and break his face." Not good. If you have seen someone show intent or desire to do real violence please let us know.
  3. Countrygirl

    Countrygirl Senior Member

    Hi Advocate,

    Yes, i have read this too. I think it was in the Times.
  4. Martlet

    Martlet Senior Member

    Near St Louis, MO
    This is not the best way to go about it. MPs represent their own constituencies and the best way to tackle this is for individuals to write to, or go to the surgery of, their local MP and tell them their own personal experiences. I do know this. I was involved in British politics for 17 years of my life. Remember, your MP represents you. If there are enough of you each telling your personal stories, and enough MPs are hearing the same thing, they begin to ask questions. But petitions do nothing - especially when they are signed by people from outside the country, let alone outside a given constituency.
  5. garcia

    garcia Aristocrat Extraordinaire

  6. garcia

    garcia Aristocrat Extraordinaire

    More info from Daily Mail:

  7. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Quite right Martlet. Which just shows that there are right and wrong ways to go about these things - or should I say effective and ineffective ways. I would though contend that a letter from an organisation carries more weight than from an individual.
  8. ukxmrv

    ukxmrv Senior Member


    Thanks for the comments on the drinking of water. I wouldn't mention a case in this context if I thought that the person really was a danger to themselves. There are people I do consider a danger and have met some, but no not in this case. The person concerned was released but as far as I know no apology given after tremendous bad treatment. I can't say more as I would like to protect their privacy.
  9. Adam


    Sheffield UK

    Sorry if I have poured oil on the fire by mentioning high profile advocates. I am largely in agreement with your views. Like some other members I wonder how best we can get a better press. The Times article is a move in the right direction. The Blood supply issue could be a major source of publicity. Good or bad I'm not sure. I think a lot of Hospital consultants will feel a lot more comfortable when they have some real science to count on and will turn the tide for us. I wish I had more to contribute and wish you good luck with your letter. I will try and contribute something.

    take care

  10. flex


    London area!!!!!!!!!!

    I am frustrated at the lack of CONSTRUCTIVE criticism from some people who are able to put in their 2 cents worth. Not people whom are unable.So many people are desperately saddened that they cannot offer more help even though they want to. Others are doing what they can. I have been so positive on this matter over and over again.

    I really would like some positive feedback from people who are feeding back. I have had much of this.

    However there sometimes is an under current of very draining negativity that I certainly do not need. I need to know that people are on my side and I'm not wasting my time. The letter is never going to be perfect. It doesn't have to be. It just has to
    open up the issue, mainly to the press. Every authority that doesn't act will be open to accusations of negligence if they have been presented with serious concerns IN WRITING.

    They will all know who has a copy of the letter. Am I the only person who gets this strategy, please let me know if I am because at the moment I am really wondering if its worth it.

    I really believe in this idea, I am yet to come across a better one. It really doesn't matter if we call it a letter, a campaign a petition or just a bloody good moan. That is not the point. I have laid out the strategy and it is that strategy that I have faith in.

    Why are we sweating the small stuff? Its not us I am trying to turn the heat up on. Send a copy to all the addressee's AND WHOEVER ELSE YOU WANT. IF IT YOUR MP OR SENATOR OR DOCTOR OR BOB HOPE AND THE POPE I really don't care its not worth arguing over. We are all on the same side.

    I am of to the "cake" thread. That was much more fun. Anyone care to join me for a cuppa and a slice of "cake"?
  11. JayS

    JayS Senior Member

    I'm in a Facebook group that has his name in the title. I think it could at least be mentioned that the guidance to drink a lot of water is given to patients who end up with an abnormal result on a tilt-table test. The doctors i spoke to after mine told me to do just that.

    Of course, Peter White forbids the use of tilt-table tests for ME patients, so one can't really expect a UK GP to be familiar with this. Still, to honestly judge that he was a danger to himself? Looks to me like it was a doctor who already had a pretermined bias about ME patients & when faced with something he didn't know anything about...of course, I wasn't there, but I did read a lot of stuff on the FB group back last spring when this was going down.

    I'll leave it at that if privacy is indeed an issue, but this was all public at the time. And the idea that an ME patient was sectioned for following precisely what I was told to do by doctors here in NYC was particularly galling to me.
  12. Samuel

    Samuel Senior Member

    This would make a good article in a magazine.

    Investigative reporters need to learn about this.
  13. Mark

    Mark Former CEO

    Sofa, UK
    Campaigning Advice I've received (UK)

    This may not be exactly on topic with the thread, but it's on topic with what people were talking about earlier, at least...If you think the following content, and everybody else's contributions on this subject, are worth collating and putting into a dedicated thread of - something like - 'UK campaigning tips and advice' - then please suggest a thread title by PM to me, or just go ahead and create one and I'm happy to move this there.

    Over the last month or so I've contacted pretty much everyone I can think of that I know who has some advice to offer me regarding campaigning around these matters (specifically: XMRV, and CFS health policy) in the UK, and asked their advice, and earlier discussion on this thread prompts me to report on what came back. The main reason for posting here is to underline and support the excellent posts a little earlier on this thread by Martlet and Thefreeprisoner in particular - what they're saying is sound campaigning advice and absolutely consistent with what I've been told.

    Unfortunately I can't give the credentials of these people without being personally identifying, all I'll say is they are all very smart, very well-read and very qualified to comment on the areas I asked them about - most work in health, one in law, and one works in the houses of parliament. I asked them what one might do that might have some influence...

    Since there's been some talk about influencing government, I'll start there. I asked my contact in the House what works when communicating with MPs, and who to write to about this subject. They said that your own MP is the place to start - - and that when writing, the important thing is to be cool, calm, rational, clear, reasonable, etc...and clear about what you want. In this area in particular, they said to be aware that many of the people you want to deal with have secretaries, and that everybody in these jobs who has a bit of experience tends to be somewhat wary of someone who, as they put it, "looks like they might be about to show you the contents of their matchbox"...put bluntly, they get their fair share of nutters and those people waste a lot of time, so you don't want to come over like one of those! Beyond MPs, there are maybe a handful of people in the relevant health select committees worth writing to, and all the way up to the health secretary from there may be worthwhile - if it's very well written. Obviously, keep it short enough to read, clear in what you are asking them for, ideally having one or a few specific requests, and get it proof-read unless your english is excellent. With your own MP, arrange an appointment and go and talk to them if you can, or if not, perhaps suggest a phone call?

    You can of course get questions asked in the house, but bear in mind those asked previously, and how they were wriggled out of - you need somebody on the ball to follow these things up properly:

    One person who understands how the NHS and UK Health Policy works as well as anyone I know, advised me that specifically in terms of changing the policy regarding any health matter, actually campaigning through politicians is less relevant. He said that government policy is always going to be - and should be - driven by expert advice, so when talking to them about any kind of health detail, they will simply refer the matter to the head scientists, doctors and academics. He said something along the lines (a fairly obvious point) that it will always be in practice pretty much impossible to make headway on any matter of health policy without scientific consensus in your favour. He said that in terms of getting changes in health policy, even with strong science behind you, it is always a slow process because essentially an entire community of thousands or tens of thousands of key professionals has to absorb the scientific information, deal with all their questions and scepticisms, come round to accepting the reality, and then reach sufficient numbers to form a consensus. He said that when GPs (in particular, but also consultants in relevant disciplines and other key practicing professionals and leading academics) have all come round to an idea, there's then basically a momentum for changing the clinical guidelines. Not that it's a democracy, of course, but that in terms of changing policy, this is the community whose influence matters. It's very difficult to get the time of these people, by definition, because their time is incredibly full, of course, and they have vast amounts of literature in front of them demanding their attention. But on the other hand, clinical guidelines are constantly shifting, it is their job to keep up with it, and they are doing so - the better ones, of course, do so more proactively than the not-so-good.

    Regarding GPs specifically, I was told by one person that the situation is this: the average GP may typically have, say, 2-5 people who may have ME/CFS in their practice and they really don't know what to do with them. They have so many other matters to deal with, they don't have time to deal properly with these chronic patients, and they know it, but have nowhere to refer them except for CBT. They now by and large feel that there is almost certainly some physical explanation, but until that cause has been identified and a reliable diagnostic tool and treatment is available, they don't know what they can offer. btw, I've got no sense at any time that GPs disagree with this assessment that there are no reliable treatments and diagnostic tests, and persuading them that the guidelines they receive on this are wrong will be next to impossible; they seem to leave that question to the scientists almost as a matter of principle and I'm guessing they would say that if there were anything definitive available, it would have been proven. Regarding CBT they would tend to think it might be helpful for any condition, and since there's nothing else they can offer, they would tend to consider it, but on the basis that it was helping deal with the consequences of a physical illness. (All this seemed rather interesting, because of course that's not everyone's experience although it is consistent with mine, and I think there's a great deal of variability. My overall sense was that the consensus is that ME, CFS, and other things besides, clearly have a physical explanation that we just don't know yet. Whether XMRV is that explanation...they will of course wait until it's conclusively proven. But it felt striking that this quite favourable position is so at odds with what we perceive as the reality behind the CBT-driven approach, born as it is out of the somatised history of ME and CFS, and I would suggest, very much at odds with what Wessely and Co actually believe, regardless of what they may now be saying. And what kind of scientist is this, whose findings and theories can change so seamlessly and effortlessly with the political fashion of the day? A most convenient flexibility.

    Although my friends didn't mention it, the Medical Research Council (MRC) is the other key body of significance to us, but I'll have to leave that to someone more qualified to describe their role and how to contact them...they are the linchpin really, and there's a strong case to be made that the (control of the) direction of research funding is the key issue to be thinking about and targeting.

    There was one big theme that came out: everyone I spoke to said from the outside that it was now well known that ME/CFS was a physical condition, that this had all been thrashed out, and policy changed, based on new scientific evidence, and they were shocked at any suggestion that this is not now accepted - to continue to claim, or behave as if, ME/CFS is a psychological condition, would be outrageous to them. I found that very positive, and it does suggest a sensible and achievable campaign goal (and indeed something that XMRV will hopefully make inevitable): to have Wessely's centre replaced by a new research centre (like the ones CFSAC are talking about, the WPI...). Incidentally, this would be a more attractive campaign - and this is so important to us - by virtue of the fact that one is suggesting something definite, positive, practical, achievable, tangible, positive, and above all, positive. People like positive.

    One last thought. The only relevance of "heroes" (which I understand to mean celebs with ME/CFS) is for public campaigning. There probably is also a place for campaigning aimed towards the general public - and really that means somehow influencing the mass media (hopefully positively) and anything else is a waste of time - and I think the general public out there - right now at least - have a high awareness that ME/CFS is (a) real, (b) physical, (c) devastating. What they may realise less are the following key points:

    There are almost 3 times as many people with ME/CFS in the UK as there are people with MS.

    There has been no publicly funded biomedical research whatsoever into ME/CFS in the US or UK since 1991. (indeed, has there ever been? Total historical spend anyone?)

    The entirety of the meagre 800,000 annual research budget for ME/CFS (3 per sufferer per year) is still spent on psychological research
    (based at the (controversial? hated?) King's College Chronic Fatigue Research and Treatment Centre, provisioned by Prof. Simon Wessely, and offering only CBT and GET.*

    Psychotherapy - CBT - and Graded Exercise Therapy - GET are still the only treatments approved for ME/CFS under the NHS, even though a range of medical diagnostic tests and treatments are now available, both privately and in the US.

    * - CBT: Cognitive Behavioural Therapy - psychotherapy used here to persuade patients to change their beliefs about their illness. King's College will even offer psychotherapy to CFS patients over the phone. **
    GET: Graded Exercise Therapy. Proven harmful and even dangerous to many people with ME/CFS by numerous international studies. In studies, UK subjects are only asked whether the treatment was (a) helpful or (b) had no effect.

    I think most people would be shocked by the first three of these simple facts, at least.

    ** - PS: Sorry for letting you know you can get CBT over the phone from King's College folks, please don't have nightmares...:eek:. But seriously...I mean, these are some guys, no? Mystery illness, nobody has a clue, devastating, hundreds of thousands of people...and this one guy is so good, you just give him the entire 1m-a-year research budget and a call centre (for those too sick to move), and it turns out that (his) rigorous studies prove his to be the very most effective treatment available, bar none. Yup, this must be some guy all right - and besides all this brilliant, brilliant work, he even finds time to be a prolific researcher on other people's work too. Sadly, everybody else's work isn't nearly as good as his and almost all of it turns out to be rubbish - he's obliged to publish hundreds of research papers explaining a wide range of imaginary phenomena other people thought they saw. But what a guy! It's like he just says the magic words, and all those scary ideas just disappear...
  14. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Very good post Mark and very useful and informed information.

    One thing that struck me was the weight placed on reaching a scientific consensus. I can understand why this would be the case for the medical profession and also why governments might prefer to rely on professional advisors to inform public policy. But I wonder is there more to it than this somewhat idealised view. There have been recent UK stories (classification of cannabis) where policy makers appear to have ingnored their own medical experts for reasons known only to themselves.

    I've also being musing lately on the difference between the perception and treatment of two 'modern illnesses' - ME and ADD in children. On the face of it, you might expect that 'bad behaviour' in children, at a time when UK parenting skills are widely regarded as poor on average, would be fertile ground for the psychiatrist/psychologists. Compare this to apparently stable and often professional adults struck down with an illness that wrecks their lives and careers. Yet medication is routinely administered to children and the psych lobby appear to have gained no traction as regards ADD i.e. the condition has been medicalised and this is regarded as the medical concensus. No talk there of laziness, malingering or secondary gains.

    Now it could well be that ADD is an organic illness, clearly shown to be and easily treated with medication, I don't know and haven't researched it. I do wonder though, why an organic cause was so readily accepted. Could people power be a factor. Lets face it, no parent would readily accept responsibility for their child's bad behaviour and the government doesn't want its public order and education policies questioned. Whereas with ME, there is a substantial subset of the population that, for whatever reason, likes to feel superior and is more than eager to believe that others less fortunate are lazy, ill disciplined, workshy or neurotic.

    Sometimes medical science follows public opinion.
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Mark, the MRC set up an "Expert Panel" for CFS/ME in 2008, chaired by Prof Stephen Holgate.

    The history of MRC CFS/ME strategy is here:

    The history of the panel is here:

    Research Strategy
    MRC CFS/ME Expert GroupTerms of reference
    MRC CFS/ME Research WorkshopPrevious MRC activities
    Current MRC-funded research projects
    How does the MRC decide which research proposals to fund?

    Panel Members Declaration of Interests here:

    Meetings of the panel here:

    December Workshop Agenda on this page:

    List of Workshop Participants (obtained by me under FOIA) on this page:

    Note of Workshop to follow.

    The MRC has been convening meetings, holding consultations around CFS/ME since 2003, and now has this expert panel (of which Prof Peter White is a member). The only patient organisation reps invited to participate in this panel are AfME and the MEA.

    Holgate was interviewed for the Times2 article on Monday:

    January 25, 2010

    ‘Doctors, school, friends thought I was faking chronic fatigue syndrome’

    "...Stephen Holgate, professor of immunopharmacology at the University of Southampton, chairs the Medical Research Council’s expert group on CFS/ME. “As a clinician who sees patients with this group of diseases I recognise there’s a real thing here, it’s not all psychiatric or psychological,” he says. “Unquestionably in some of these patients there are abnormalities and biochemical changes in the brain, the central nervous system, the spinal cord or the muscles. My personal view is that we’re not dealing with a single condition.”

    In 2008-09 the MRC spent 728,000 on ME/CFS out of a total research budget of 704.2 million. The MRC is ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not make it an attractive option for top quality scientists.

    “The debate is so polarised that scientists are frightened to get involved,” says Holgate. “My aim is to get everyone round the table, so that instead of people throwing bricks at each other we can agree on the priorities, get some quality proposals written up and build confidence in the research community. The need for more research is urgent because what’s happening now is unacceptable for patients and it’s costing the Government a lot of money...”​

    Holgate is a member of the CFSR Foundation's Research Committee and sits on/chairs several MRC committees. He has collaborated in the Kerr/CFSR Foundation Gene studies.

    Note how Holgate reinforces the "scientists too frightened to get involved" mantra. Note how Holgate reinforces the construct that the ME patient community and its advocates and representatives are hostile. (As did the "Gibson Report".)

    In the Minutes of the most recent meeting of Forward-ME (a caucus group to the APPG on ME convened and chaired by the Countess of Mar) Sir Peter Spencer is minuted thus: November 2009.htm

    Minutes of the meeting held on Tuesday 24 November 2009

    Under 5: Matters arising:

    iv) Charles Shepherd had circulated brief notes about the November workshop. Comprehensive summaries would be available on the MRC website. Key research projects had been identified and there were real indications from Professor Holgate of support from the MRC for a variety of different proposals some of which were not direct research – funding for PhD students, for example. Christine Harrison asked whether there were any experts in neuroimaging. Charles Shepherd said the key findings had been covered by a speaker who was not a neuroradiologist.

    Peter Spencer said that remarks had been made about the aggressive nature of some of the correspondence together with the number of freedom of information requests from a few members of the ME/CFS community was taking up to 80% of one person’s time at the MRC. It was felt that this was unhelpful as the time could better used for constructive purposes. There was a danger that the hostility to the MRC would be used as ammunition against proposals for research for ME/CFS in what was an extremely competitive field. This was the best opportunity for research support for 10 years and the CFS/ME community should not let it slip through their hands. It was important to get new talent and new technology into the field. It was recognised that the heterogeneity of the disease made it hard to produce proposals.

    There was an interest in setting up tissue banks, though there is a degree of scepticism about the value of this project.

    There would be another meeting of the expert group in the New Year.​

    Note that the minutes fail to clarify whose opinion it is that

    "There was a danger that the hostility to the MRC would be used as ammunition against proposals for research for ME/CFS in what was an extremely competitive field."

    Sir Peter's? The Countess of Mar? The MRC? An attendee of the CFS/ME December Workshop? Prof Holgate? Dr Charles Shepherd?

    This is a very questionable concept.

    The MRC states that decisions to fund research applications are based on the quality of the proposals - not on how quiescent and passive the constituency of interest for that research might be, or might be perceived to be, by the MRC. Or on how many FOIs are submitted for information around research strategy activities, or requests for meeting minutes or Lists of Participants for Workshops, or for information around rejected research proposals. (One advocate, not me, has had an ongoing FOI around research proposals which went to Tribunal, and no doubt the MRC is still smarting about that.)

    I should add that although I use the FOI Act to obtain information from the MRC, I have never advocated nor encouraged multiple requests for information and that all requests made by me for information (to any organisation, agency or institution) are undertaken in accordance with the Act, and in a formal, business correspondence manner.

    I hope this information is helpful to you.

  16. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Declarations of Interest

    In my previous post, I posted the URL for the DOIs for the MRC CFS/ME Expert Panel:

    The URL for Prof Peter White's Declaration is here:

    There is a Declaration of Interest (UPDATED 4.29.08) for Prof Michael Sharpe here on the website of the APA, publishers of the DSM. Sharpe is a member of the DSM-V Somatic Symptoms Disorder Work Group for the revison of DSM-IV.

    This lists a number of companies for which payments for clinical assessments and reports have been received within the time-frame specified by the DSM-V Task Force, by Prof Sharpe, including UNUM.

    I work under my own name and I cannot publish information or make claims which I cannot substantiate with documentary evidence.

    The only evidence I hold of links between UNUM and Prof Simon Wessely is that in 2007, Prof Wessely contributed to the UNUM Provident Chief Medical Officer's Report 2007. On what basis this essay was commissioned is unknown.

    Mind over Matter - Exploring the issues of Mental Ill Health


    Why and When do Doctors Collude with Patients? - Professor Simon Wessely - Director King's Centre for Military Health Research.

    Collusion – it must be a bad thing, mustn't it? Just recently, Conrad Black was found guilty of colluding with some fellow directors to defraud his shareholders, some airlines were accused of colluding in price fixing, as was the USA of colluding with China to bypass global warming targets. But doctors, as members of a highly prestigious ‘helping' profession, couldn't possibly do such a thing.

    But we do, and we do so every day. Sometimes we do so out of self-interest. But more often than not it is done from a genuine belief that it is in the interests of the patient. And sometimes it is even true.

    What The Patient Doesn't Know Won't Hurt...

    (The essay by Dr Christopher Bass is also noteworthy.)

    The Interface Between Psychiatric and Physical Disorders - Dr. Chris Bass - Consultant, Liaison Psychiatry.

    As a psychiatrist who has spent the last thirty years working exclusively in general hospitals, I am acutely aware of the firewall that continues to exist between psychological and physical services and/or disorders. 19th Century psychiatrists were not called alienists for nothing, tucked away in the asylums in the middle of the county, out of sight and out of mind. Has much changed in my lifetime?

    According to Holmsey, Prof Wessely has denied working for UNUM.

    But Min tells us that he has.

    Min, making statements that someone works or has worked for a company or has conflicts of interest without providing sources for that information, documentary evidence etc is frankly pretty meaningless.

    So please, Min, could we have the documentary evidence that supports your statement?

  17. Sparklehorse


    Hi, the bit that annoyed me from Holgate's quote was:-

    As a clinician who sees patients with this group of diseases I recognise theres a real thing here, its not all psychiatric or psychological,

    So, as I read this, he does think that ME/CFS is partly psychological or psychiatric. No wonder there's such a psych presence on his new research group. What a joke. Don't expect anything of worth to come out of this lot in the near future. Not impressed with Holgate.
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    Absolutely. I said exactly the same to someone, yesterday. I don't have much expectation of this panel, either. The MRC has now been talking for six years about funding "quality" research.

    And as for "researchers are too afraid to get involved"...I am sick of seeing this ingeminated by Spencer, Holgate, Peter White, Vivienne Parry (Sense About Science, Administrator for GUS who sunk 360K into the PRIME Project, Patron to ME Solutions who are currently seeking funding for Kerr/Bansal XMRV replication), Charles Shepherd and now it appears the MRC may be using this as a means of control.

    It doesn't stop KCL taking funding. It doesn't stop Liverpool and Manchester taking funding.

    If the MRC were in a position to ring fence a sizeable funding allocation specifically for ME and CFS - you can bet yer boots that researchers would be there like a shot.

    When this panel, another year down the line, are still "sitting round the table", and still no substantial funding approved, they will scapegoat the ME community.

    Too demanding.
    Too hostile.
    Too polarised.
    Too many patient orgs...
    We can't let you have any money...


    And shocking that Holgate has bought right into this. It didn't stop Kerr from accepting 600K for one of the gene studies.
  19. ukxmrv

    ukxmrv Senior Member


    I think that your posting is really great. It's like a beginners guide to campaigning. People with ME have been doing all the things that you have mentioned for decades. I certainly have been. It's good that you put it in writing because sometimes when someone new to campaigning starts they don't even get that far. Sometimes the beginners just keep doing the same things, it doesn't work and then they give up.

    We have been lobbying MP's, had questions asked in the house, lobbied medical organisations, organised petitions, demos. You name it - it's been done.

    Would we need is the bit after what you have written. The immediate or advanced version to show what campaigners are doing and maybe should be doing. Something that shows the blocks not on level 1 (as per your post) but above that. Things like the NICE legal challenge and where to go from here.

    That's what is missing from ME campaigning in the UK and would give beginners a better idea of where to put their resources.

    I'm too ill and too weak to write something like this. It does need to come from the actual patients though and not people who pretend to act for us. That is the problem.

    Is there any chance that you could go back to these super smart people and say to them "OK, we get all that, no surprises there, so what now?" That could be useful.
  20. Esther12

    Esther12 Senior Member

    I think it's disgusting that it's seen as acceptable to blame patients and their representatives for the piss poor way that CFS is being dealt with. But I also do think that it's true that CFS patients seem like angry nutters to a lot of researchers.

    CFS patients are having to deal with a lot of strains - often seriously disabled and utterly dismissed. It's not surprising we're rather highly strung and personally invested in CFS research. Rather than tell patients that they need to learn to behave before they'll be treated properly, the MRC and others should be ensuring that more is doen to make sure this difficult condition is dealt with properly, even while patients are so divided and on edge. It seems like everyone accepts that CFS patients are badly treated by the medical system, but it's also thought that they should not respond negatively to that, and it's acceptable to blame them when they do.

    I don't know what the best way to move foreward from here is. As ukxmrv said, I think Mark's post is a good introduction, but I also understand why people who've been suing those techniques for some time will be find the endless need for obsequious grovelling to be something of a strain.

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