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In Brief: Muscles and the 'myalgia' in ME/CFS
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Xmrv research uk

Discussion in 'XMRV Research and Replication Studies' started by joyscobby, Oct 30, 2009.

  1. joyscobby

    joyscobby Senior Member

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    2222 22 222c

    ffffffffffffffffffffffffff gggggggggggggggggggggggvvvvvvvvvvvvvvvgv ggggggggggg
  2. Dolphin

    Dolphin Senior Member

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  3. Min

    Min Senior Member

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    Simon Wessely, is Professor of Psychiatry at King's College London. We have as much chance of this being a fair, unbiased study as we have of sprouting wings and flying to the moon. I expect this study is being implemented to discredit the WPI findings.

    What will the criteria be for selecting patients? Will, as usual with M.E./CFS research in the UK, the patients with neurological M.E. be weeded out and only those without M.E. but with mild mental disorders be left to study.
  4. garcia

    garcia Aristocrat Extraordinaire

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    Min, I must be missing something. Simon "Weasel face" Wessely doesn't have anything to do with the above linked phd study.

    It is a study into the role of XMRV in human diseases from the department of infection & immunity, University College London.
  5. bananaman

    bananaman

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  6. Min is correct I'm afraid.

    Wessely's choking odour reaches far and wide in the city of London. UCL contains the National Hospital for Neurology and Neurosurgery. The best neuro hospital in europe, and even the world.
    Who is going to believe what you say, if you go to the best, and report it's garbage? It is the best state hospital for sure, but not if you have ME, GWS, MCS etc - then it's the worst.

    I do commend the OP you for finding the research and trying to help. One must remember that something is rotten in the state of Denmark though - and this starts and ends with those who work in the NHS for the state. A state health care system that denies all care for people with severe neuro immune disease since day one, isn't going to change. There are too many people like me preparing court cases for them to admit they were wrong and had a hidden agenda. CFS/ME will remain mental illness, and possibly XMRV will become XAND. And the genuine ME patients will becomes XAND patients and we will be expected to say nothing and accept the torture of the present and past

    UCL is renoun for abusing patients with severe ME in the name of 'Neuro Psychiatry'. (Note I say severe). Severe people cannot get off the bed and walk, protest. They remain static.
    They held me in UCL in a unit there, along with other people (not when I was there) due to our 'belief' we have ME. This was because we were bed bound, and not able to work. Work is all they talk about. Do you have a 'recovery plan'. Why not? Why don't you work? Our patients recover in a few weeks with CBT/GE/Pacing, why don't you? That kind of thing.

    It's nothing like you'll ever experience because it's done behind closed doors. The rest of the patients are drugged and mentally ill - they won't defend you, at best they ignore you, at worst, they attack you. You're on your own behind a magnetic locked door. With no access to medical care (doctor). If you get chest pain and can't breathe - they leave you in the room on your own. No joke. Try that for size guys. We are used to going to ER in an emergency, not having 'Nurses' (not real nurses) walk off or tell you it's all in your mind, as they do in UCL.

    They altered my 14+ year history at the time of severe ME to 'Somatization Disorder' and told me to my face NEVER to use 'that word on this ward'. ''ME''.
    I have never before had such agression that when I say ME, someone holds their hand up infront of me, like a stop sign. Totally bizarre yet very scary when you're unable to sit upright in an open ward,
    sleep, or get food or water. They adore watching you attempt it, it amuses them. It 'prooves' you're a malingerer because you do it, as you need to survive.

    Simon Wessely's CBT expert was drafted in from Kings to UCL to 'cure' me with CBT by challenging 'Automatic Negative Thoughts'. So our point is, that if this is what goes on in UCL - their 'CFS' patients will be people who are mentally ill, and report chronic long term tiredness. Chronic long terms tiredness is the DOH/NHS definition of 'CFS/ME'. It's on the NHS website. NHS Choices. Look yourself.

    Don't expect this XMRV study to be on our side at all. Why would they admit that mentally ill 'ME' patients have been infecting the national blood supply and abused by their OWN HOSPITAL?
    No way is that going to happen. UCL is so corrupt they claim me of self discharging. How can a severe ME patient walk out of a hospital in a strange city with no transport? Insane. More
    insane is they leave my discharge note in my medical records - thus proving I didn't self discharge. They write what they like, as they hope you'll die before you find out.

    I say these words, because when someone can look you in the eye, who works at UCL (where this research is done) and tell you that if they kill you, they'll 'apologise' then you know - the game is up, and you realise crystal clear what is happening. Imagine that for 8 weeks and you cannot get of the door. Imagine being threatened, called a 'fool' to your face infront of the whole staff, having people withdraw medical care when your blood pressure is over 100 diastolic, pulse 170 when in pain. They literally, walk away from you,

    Only a psychiatric ward can do this, in a normal NHS ward you can complain press the emergency buzzer if need be. In these places there are no buzzers, no nurse calls, and no nurses.
    There are spies called Psychiatric nurses who in place of a BP monitor hold clip-boards. They stand in your room and scribble down what you say, and write things like 'good appearence, combed his hair, smiled'. Or 'talked about Dr x', or 'Seemed to be having an argument with x'.. etc etc. Nothing to do with medical care, and everything to do with surveillance.

    Big brother is watching you, literally. This happens to severe ME patients as we speak - this was for me, only a few years ago, not back in the 80's.
    UCL does this, and this is where the research into XMRV will come from into the life-style choice (Their words).. 'CFS/ME'.

    People who view us as scum and filth - will hardly produce research that's going to help us. Think about it.
    You cannot beat the state and I am as vile as they describe.
  7. Scavo86

    Scavo86 Senior Member

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    That is a sobering account to read cold_taste_of_tears and I would have hated to go through that experience, it sounds like you were subjected to neanderthal practice, quite shocking considering that we are in the 21st century! However, can we not be buoyed by the fact that the researchers are first and foremost virologists, immunologists and microbiologists - at some point the tide has to turn and I am hoping we are currently beginning to see that happen.
  8. Min

    Min Senior Member

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    Are the ME Research UK and Ramsay Research Trust's studies, if they can fund them, going to be independent of this?
  9. Aftermath

    Aftermath Guest

    Wessley

    If and when the causal link between XMRV and CFS is proven, you guys in the UK need to go all out with protests calling for Wessley's head.

    I'm not familiar with what advocacy groups you have over there--but they all ought to band together and organize massive pickets at his home and place of business, calling for him to be run out of town.
  10. Andrew

    Andrew Senior Member

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    FWIW, here is a youtube movie that illustrates what cold_taste_of_tears is talking about. This is about a young woman with cfs/me who was forced into a mental institute.
  11. Min

    Min Senior Member

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    I understand that the xmrv trial referred to will take patients from St Barts, where Peter White is professor of psychiatry.

    If this is true, then the patients will have been selected by the Oxford criteria (invented by the psychiatric profession to include large numbers of patients with mental disorders such as mild depression) instead of the Canadian criteria. They will not have neurological M.E. as classified by the World Health Organisation. The study will be a complete farce, as are all taxpayer funded UK studies into M.E./CFS .
  12. Koan

    Koan Be the change.

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    They have already done something like this. UK advocates have been in the streets for years now. When you consider how hard it is, given the nature of the illness, to accomplish this, and you add the fact that the UK is smaller than the US, their actions have been remarkable.

    There have been pickets outside conferences for years and what this has gotten them, in part, is accused of harming the cause of the mentally ill because they refuse that diagnosis.

    The heartless abuse of ME patients in the UK, including helpless children, is a scandal of epic proportions. Reeves is a CFS supporting pussycat compared to Wessely.

    Strange but true.

    Koan
  13. Martlet

    Martlet Senior Member

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    Although I lived in the UK, I did not have this awful experience because I was diagnosed on a US air force base. The first doctor I saw on base was British. I went to him with a rash all over my stomach.

    Bless him, he looked at the rash and scratched his head, then said, "That isn't concerning me very much, but how long have you had cognitive problems?"

    Tears of gratitude filled my eyes as I said, "We were traveling in the USA when I went down with the flu...."

    From this doctor, in ER, it was straight to family practice for a battery of tests. All were normal or "borderline." I remember sitting there and saying to the doctor, "Then it must be all in my head."

    "No," he said, "On the contrary. You are a very sick woman but I would prefer Internal Medicine to make the diagnosis."

    An hour with an internist who went to all the painful places as if he knew they were there, and who asked all the right questions and felt all the right glands, and I had a diagnosis of ME.

    He did ask if I would mind a psychiatric evaluation. I'd have been evaluated by a gorilla if I'd thought it would make me well! I went along for that and the psych agreed that it was physical. Then they ran an HIV test, just to be sure, given that I was transfused ten years earlier. That was negative.

    So, I set off in the UK with some very, very good doctors. Not that they could do much for me, but the psych talked me into using my wheelchair before I crashed, rather than waiting until the pain was too much to bear.

    And with that good support from physicians, I was able to face the rest of the unbelieving world a lot better prepared than most Brits. I started a support group in my area and heard terrible stories. Tales of women being told they needed to go and have more children, or being told they were just tired from too many children. There was one case in our area of a man who left the (British) psychiatrist's office and throwing himself off a bridge.

    There was the story of how disability benefit claimants had to go in person to see a tribunal. The office was on the ground floor, but they blocked off access through that route, forcing claimants to climb stairs, walk a corridor, then come back down stairs at the other side of the building. Of course, the sickest ME people couldn't make it, so were declined benefits for not turning up at their appointment, while those who did make it were told that if they could climb the stairs, they did not need benefits.

    I could go on with horror stories about the way British pwcs are treated, but I think everyone already knows how disgusting it is.
  14. Dolphin

    Dolphin Senior Member

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    Where did you hear this?

    This is information I saw posted on a list today:

  15. _Kim_

    _Kim_ Guest

    Letter from Charles Shepherd

    This was posted today as a WPI facebook discussion topic and thought that it should be reprinted here.

    Christine

    Thanks for forwarding this letter to MPs.

    The MEA is obviously in contact with retroviral researchers, politicians, the Medical Research Council and DoH civil servants on this issue and I spent much of Thursday dealing with XMRV in London.

    I'll be updating the MEA position statement later in the coming week to include some of the feedback we are receiving from various sources.

    In the meantime, it is firstly worth noting that:

    We now have at least four good UK research groups who are all very keen to follow up these findings in various ways - ie finding out what this virus is doing (or not doing); supporting or refuting the American findings on prevalence in both patients and healthy controls etc.

    At present, finance does not appear to be a significant short term problem here in the UK - and the MEA has made it very clear that funding applications to our RRF are welcome but the researchers I have spoken to so far are all OK with the short term funding position.

    The MRC Expert Group on ME/CFS research will be discussing XMRV at our Workshop in two weeks time.

    Secondly, there is an immediate need to:

    Try and confirm or refute the American figures on prevalence in ME/CFS patients and healthy controls using both stored and 'fresh' clinical samples (the latter is very important).

    Develop and agree on a blood test or (more likely) a collection of blood tests that will confirm the presence of this virus

    Establish what this virus, if present, is doing (or not doing) in the body
    Get some information and co-ordination on what different international research groups are intending to do

    I'm confident, given the interest in this virus (and the constructive questioning of the study), and my discussions last week, that this type of laboratory based research will be able to proceed fairly quickly here in the UK

    When we have some answers (hopefully not too conflicting) clinicians and researchers can, if appropriate, then move forward with testing people and setting up clinical trials of treatment.

    This info may help you regarding how to follow up the parliamentary angle. I will be meeting Dr Des Turner, Chair of the ME APPG, on Tuesday this week.

    It may be that we will need a proper parliamentary campaign once the situation becomes more certain.

    Apologies - but I won't be able to get into detailed on-going correspondence on XMRV. There is just too much email on XMRV pouring into my in-box!

    Regards

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
  16. Mark

    Mark Acting CEO

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    Don't let them off the hook!

    I'm changing my tune somewhat, based on the latest information I've been reading, and on a renewed respect for what kind of suppression of the studies may be possible.

    Understandable approach from an organisation with a reputation to protect, but there comes a time when you need to stick your neck out to win the race, and the situation is already certain to me now I've studied the evidence in depth. The UK public studies will manage to not replicate WPI findings unless we fight for it, the CDC too by the sounds of it; that's 3/7 down for starters, and we're nearly 50-50, perhaps already good enough for an inconclusive 'study of studies'. I think we need to somehow lay down markers so that when they report, we can say "I told you so", and I think we need to use FOI and parliamentary campaigning and whatever pressure we can generate to force the studies' dirty tricks into the light. If we don't, and the UK and US studies succeed in muddying the waters, who knows how many more years they can spin all this out? What they did to DeFreitas they can do again on a bigger scale, but FOI and hard campaigning really can bring things out that they don't want in the open. The Independent are solidly on our side...Daily Mail too maybe?
  17. Martlet

    Martlet Senior Member

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    I absolutely agree. My time spent in politics taught me that reactive campaigns do nothing. We need the public on side, and that takes proactive campaigning.
  18. Alice Band

    Alice Band PWME - ME by Ramsay

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    I was wondering what people would suggest as our next step in the strategy to ensure fair research trials are held.

    We already have people who will write letters and a smaller number who will turn up to public meetings and protests.

    Although Barts may not be holding the trials, I have personally spoken to people involved there and it has been discussed. It may have only been along the lines of providing patients to another trial or just a general discussion of damage limitation over the virus publicity (and away from the CBT/GET model).

    It may have also been damage limitation over the PACE study being published and then "lost" over the excitment of the virus discovery (oh happy day! but unlikely).
  19. Mark

    Mark Acting CEO

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    That's it in a nutshell. Lets get that UK Group moving:
    http://forums.aboutmecfs.org/showthread.php?t=1147

    I've concluded that I'm not prepared to risk everything on the premise that there's no 'them' and 'they' can't cover it up again.
  20. Dolphin

    Dolphin Senior Member

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    This is a bit of a lazy post but one thing people could do is draw people's attention to the petition:
    CDC CFS research should not involve the empirical definition (2005)
    http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html

    It contains links to lots of information that is critical of the definition.

    People could ask groups to highlight it in some way e.g. link to it and/or mention it.

    And of course it shouldn't be forgotten that this definition has already been used for dozens of studies on CDC cohorts including two on child abuse. But an awful lot of people even in the ME/CFS community won't know about the flawed definition.

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