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Article: UK Govt Turns New Leaf ? (Why the UK Loves ME/CFS More (!) )

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 7, 2012.

  1. lilpink

    lilpink

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    It's a cumbersome analogy, but looking at Sjogrens' syndrome in this way is akin to using an AIDs budget to research candida. Just because some people with ME might have Sjorgens' syndrome (can we even quantify how many given the absurd use of criteria used in most quarters?) it doesn't compute to study that illness and pretend we can extrapolate the data to ME. Ludicrous.

    The MRC are no nearer accepting what real ME entails than they ever were. This is a sop...I'm surprised anyone is fooled by it.
  2. Esther12

    Esther12 Senior Member

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    Any link between Sjogrens and CFS is difficult to tease our, due to all the normal problems with studying CFS, and also because some see Sjogrens as exclusionary. If there is an autoimmune component to CFS, then there will probably be an association with other autoimmune problems... but this could also be interpreted as patients with autoimmune problems being misdiagnosed with CFS.
  3. Firestormm

    Firestormm Guest

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    I think I will wait to discover more about the project relating to Sojorn's before making any all-embracing conclusions that it should or should not have been granted funding in the way that it has. Same goes with the previous comment about the 'Hep C' project being included.

    Cort - the MRC actually provided a further 150,000 to the total allocated by the way: http://www.mrc.ac.uk/Newspublications/News/MRC008410 that link is the full press release.

    I've requested that they update their research page with more detail about all of these projects.
  4. pollycbr125

    pollycbr125 Senior Member

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    The money was supposed to be going to biomedical research into me/cfs how can it be justified to take money from this budget to do a study on an entirely different illness ?

    Just because there may be some similarities with some of the symptoms does not justify this at all . Many illness share similar symptoms to ME/CFS Lupus being one MS being another .

    can you imagine the outrage if for example research money that had been allocated to those illnesses was suddenley syphoned off for research into ME/CFS instead . Lupus and MS patients would be up in arms and rightly so they deserve their research money just as much as we deserve ours .
  5. Firestormm

    Firestormm Guest

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    I am simply saying Polly that we do not know the reasons behind the studies being granted this funding. Details are rather sketchy and we don't know what the premise was for the grants being allocated in this way. I have asked and am waiting for a reply.

    Sjoren's does have similarities with CFS/ME beyond the 'fatigue' for example. But you could be right. Maybe I should be negative or more 'realistic' I guess you might say; but I just don't believe I should - this does represent a change from what has gone before.

    I will wait to learn more before drawing a conclusion about this project and that other one mentioned is all I am saying. Also the fact that some of the researchers are 'psychiatrists/psychologists' does not raise concerns with me at this point.

    If the research is sound - and we can't judge that until more details are forthcoming and/or the studies are complete - then [shrug] what difference does it make? There will always be concern expressed at the projects that didn't get funding - but we also don't know who applied either. By that I mean we don't know what projects were not granted funding.

    If nobody else applied for example - that would lead us perhaps to draw other conclusions. Perhaps the Sjoren's study was the only study or the best that met that particular category. I don't know.
  6. currer

    currer Senior Member

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    It would be a good idea to find out what applications were made for funding and how the decision to award funding was made and who made it.
    Well done for trying to find out firestormm.

    Difficult in Britain though, with our culture of governmental secrecy.


    And I do not like sounding negative about this research. I sincerely wish I could be excited and stimulated by it. (!) People deserve some good news.
  7. Cort

    Cort Phoenix Rising Founder

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    Good point Alex - I changed it :cool:
  8. Cort

    Cort Phoenix Rising Founder

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    Part of the reason appears to be that the MHC has an advisory committee with a wide range of researchers/advocates on it. There are behavorists and people with a pathophysiological focus. I think that person is Stephen Holgate - perhaps it was he who put the committee together.
  9. Cort

    Cort Phoenix Rising Founder

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    White, of course, will fight for his study - which Dolphin pointed out ended up being over 7 million dollars - and I'm positive that NICE will continue to recommend GET and CBT - but any researcher who looks closely at the data has to be disappointed at the results. It was a very expensive program and it got mediocre results.

    If the UK govt is interested in bang for the buck - and given their financial situation they certainly should be - they pretty have to come to conclusion that they're not getting much from these therapies.
  10. Cort

    Cort Phoenix Rising Founder

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    Its hard to imagine that you will ever get wholesale change from any institution in a government or even any beauracy quicly. It just doesn't happen. The people who put the CBT and GET policies in in the UK are presumably but new figures are now present as well.

    These studies are not going to solve ME/CFS and, in truth, they are not that innovative but they could illuminate some important aspects of it. Autonomic nervous system, mitochondrial functioning, sleep drugs, interferon pathways - could all be quite helpful in elucidating ME/CFS is.

    You can see this as well its still too little (which it is) or you can see it as a shift in UK priorities - which at least in this point of time, it is as well. The MRC has never funded a slate of pathophysiological studies like this into ME.
  11. kermit frogsquire

    kermit frogsquire *****

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    Sleep drugs in King College diagnosed mentally ill patients, Mitochondrial function with grape seed extract, interferon pathways in Hepatitis C patients - Give me a break, Cort! If you correctly detail the studies you would see the truth, non of this could possibly help ME patients. Now if all the above studies - mitochondrial functioning, sleep drugs, interferon pathways - were going to be done on Canandian Criteria ME Patients, then yes it would be of some value, but that is not the case. As some one else wrote, if money for cancer research was being syphoned away to study depressed patients claiming it was valid because both conditions caused "fatigue", cancer patients would be up in arms.
    currer and lilpink like this.
  12. Cort

    Cort Phoenix Rising Founder

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    I'll have to disagree. Again - if you expect the UK medical est. to launch a major program to find the pathophysiological problems behind CFS or to treat it like well-defined diseases like lupus, rheumatoid arthritis, etc. I think you're going to be disappointed. Researchers know where to put those diseases but they don't know where to put ME/CFS. Is it an autoimmune disorder? A mitochondrial disorder? A NEID disorder? Metabolic disorder? Behavioral disorder --- talk to any number of researchers and you'll get differing opinions.

    CFS isn't even allied with an Health Institute in the US - it was kicked out of the Immune Institute and now its in the Office of the Director.

    We're in the same situation with the NIH and CDC as you are with the MRC in the UK. Expecting the CDC to start looking for viruses, for instance, is a recipe for disappointment. Its just unrealistic. The UK is not going to fund a major study into Rituximab on the basis of one double-blinded CFS study. However they will fund research that could apply to it should that finding work out. If you're looking for a complete turnaround at the UK you're not going to get it. If you're looking for signs of change they are there in both programs.

    Sjogrens - In light of the Rituximab findings suggesting that ME/CFS may be an autoimmune disorder the Sjogren's study is actually now very interesting even if it is indirect. Finding a biomarker for fatigue in an allied disorder, if that's what Sjogren's is - would be a step forward - so while I agree that the study is indirect - its possibility for making a difference is actually pretty high.

    Polyphenols/Mitochondria
    - this doesn't seem to be the same study as the one I looked at the MHC site (?). That one didn't mention treatment and focused on using new technology to assess mitochondrial functioning in the muscles

    Sleep - I don't know what drug they are using but if its sodium oxybate (xyrem) and it is found to be effective and the British Health system starts paying for it on the basis of that study (or those following) that would be a huge win for UK people with ME/CFS. Most people in the US can't afford it and we don't have a federally funded study that will help us afford it.

    IFN- a - again this has an indirect link to CFS - as I pointed out in the article - but there are possibilities. A recent study did link the fatigue in IFN-a with CFS and it did follow people getting IFN-a and identified which ones because fatigued, etc. and which did not. The people who got worse on the drug demonstrated an upgregulation of a gene that has been linked to ME/CFS.

  13. Cort

    Cort Phoenix Rising Founder

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    In the US we have dealt with this issue for many years....as the article noted the NIH has frequently labeled research that might have some connection with CFS as 'CFS research". Actually in the US that happens with every disorder...it happens with lupus and MS and heart disease - that appears to be how both federal health institutions attribute funding. I would not assume that that is endemic to CFS. I will look into it, however.

    I just looked into this. If you look up diabetes at the MRC you'll get studies on COPD, neuropathic pain, weight loss after obesity surgery, assessing dietary intake, etc., etc. The number of studies that are actually focusing on what is causing diabetes are in the minority. There are alot of studies on managing the symptoms (neuropathic pain), how weight loss works (obesity is a big problem in diabetes), how to optimize diet...all these kind of ancillary projects...
  14. snowathlete

    snowathlete

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    as someone living in the UK, i have to agree with most of the comments about this article. I wish it were true Cort, but the RMC and the UK Gov't isnt turning over a new leaf.

    Its a step in the right direction, and deserves some attention, but in reality the change is minor. If i can use an analogy to convey this:
    its like people with ME/CFS in the UK are represented by a weedy man, and the UK gov't and RMC are wrestlers that have been beating the weedy man with a chair and metal poles for years, and now they have started handing out plasters (band-aids) but only because the international crowd have started to change elsewhere (Norway for example) ...but the important thing is that the UK gov't has not stopped beating the weedy man. They still promote GET and CBT as if it were a cure, and really good for you, and offer no other alternatives, or even evidence of it being safe, let alone beneficial. They still discriminate agaisnt us, and deny us benefits, even if we have irrefutable proof of our illness, and still take children with ME away from their parents, because the parents wont play ball and allow their kids to have the 'treatments' that the UK gov't says they need...

    Am i pleased of the change - yes. Is it a hug change - sadly no. Living in the UK with ME/CFS is like living in the stone age, and bronze isnt even on the horrizon.
    lilpink and Wonko like this.
  15. Cort

    Cort Phoenix Rising Founder

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    Are you sure they are all using Oxford criteria? I did see that the XMRV study at Kings College used the Fukuda criteria. While the Canadian Criteria would be much better the Fukuda criteria is not worthless; it has been used in studies that demonstrate NK cell dysfunction, exercise intolerance, altered gene expression after exercise, etc. Is the MHC wedded to the Oxford criteria in this set of studies?

    Again - the information I got did not indicate that grape seed extract was the focus of the mitochondrial study and if that's true that's quite disappointing.

    Even if they are using the Oxford criteria I would still submit that these studies are a distinct change from the MHC's past studies and while the deficiences in them should be pointed out -and there will be deficiencies given where the MHC is coming from - that that the change should be welcomed as well.

    Asking a unit that has been almost wholly behaviorally focused for many years to turn around and institute ground breaking pathophysiological studies is a recipe for disappointment.

    Dismissing that change could have a negative impact as well. Acknowledging the change and at the same time pressing for more im rovement is the most effective thing to do in my opinion.
    Enid likes this.
  16. oceanblue

    oceanblue Senior Member

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    Personally I would have liked to see different studies in the mix (eg a Dubbo replication) but I'm still delighted that the MRC are for the first time funding biomedical research. Stephen Holgate deserves our applause for managing to push water uphill at the MRC.

    Is there any evidence that thesez studies will use Oxford criteria? I hadn't seen any.

    Do you have references for the studies treating CFS patients with interferon? I'd thought they were small and rather inconclusive.

    Thanks

    I spent a lot of time looking at the case for using Interferon-alpha as a model, which you can see summarised in the post below:
    Firestormm likes this.
  17. Calathea

    Calathea Darkness therapy

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    re Action for ME - well, I'd been wondering why they are pushing that dreadful psychological "study" being done on ME, but reading this thread has explained it. I naively rang AfME on Thursday to complain, and they said they'd look into it and ring me back on Friday. Oddly enough, they didn't.
  18. Cort

    Cort Phoenix Rising Founder

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    My guess is that most people studying fatigue produced by IFN-a will be psychologists or psychoneuroimmunologists. Andrew Miller, for instance, is a psychiatrist at Emory studying IFN-a who believes the fatigue is caused by cytokines, epigenetics or a virus - based on a talk I had with him. In fact he said - he didn't think it was the stress response - its a virus. He is in the body/mind camp; ie he is interested in how the immune system effects the brain.

    Here's from Miller's Emory profile

    I certainly understand the suspicion. These are the studies Pariente has been involved in recently. They apparently picked him at least in part because he's does alot of research into cortisol, childhood stress and inflammation.
  19. oceanblue

    oceanblue Senior Member

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    Sorry, clumsy writing by me: the para I put within a quote above was just the first part of a much longer post, which i rather more informative. I think some of the Dubbo crowd are also bioloogical psychologists, interested more in how the immune system affects the brain than how the 'mind controls the body'.

    I would have been happier if Pariente had some experience of working with IFN-alpha, rather than endless studies on cortisol but lets see what he comes up with.
  20. Ember

    Ember Senior Member

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    No big deal? According to an international panel of experts (ICC), Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds.

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