1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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California 2014: IACFS/ME Day One: Translating Science into Clinical Care: 20 March 2014
The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to...
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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. Phoenix Rising Team

    Phoenix Rising Team

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  2. Esther12

    Esther12 Senior Member

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    Hi Cort. The article's a good round up of a lot of recent news... but I'm not sure how appropriate some of the tone is. Even if things are starting to turn around now, it going to take a long time for this to filter down to how patients are treated. Recent benefit changes were heavily influenced by a psychosocial approach to disability, and are likely to push a lot of people in to poverty... it could seem a bit insensitive.

    Maybe you're aware of all this, and decided that this was the way to go - I know that I sometimes like to be rather flippant about things. I thought I'd mention it though, as I think you could end up upsetting some UK readers. (maybe I'm underestimating our hardiness though).

    (I think that you also might be over-optimistic about the impact of PACE. The results have been pretty well spun by the researchers involved, and I'm not confident that anyone else is that bothered at looking closely at the evidence. Esther Crawley released a recent peer reviewed paper aimed at NHS commissioners which claimed that PACE showed a 30-40% recovery rate for CBT/GET. If decisions are being made based on that sort of spin, rather than reality, things are not going to improve at all).
  3. Sasha

    Sasha Fine, thank you

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    Thanks for covering this, Cort. I think I read some time ago that this year's money is actually two years' money held over to look like a big boost. I don't know whether any other UK people who are more clued up than me can confirm that. Our annual govt spend of less than 1 million is pitiful.
  4. alex3619

    alex3619 Senior Member

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    I think the title needs a question mark: UK Govt turns new leaf?

    It remains to be seen if anything has changed. I hope it has, but it will take time to restore trust.
  5. Enid

    Enid Senior Member

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    Nice article - thanks Cort - a beginning at last in the UK for ME - can't help personally thinking that answers may lie in immune dysfunction from virology (origins) though.

    Here's to a different up of tea - it's been 12 years :In bed: in the making.
  6. meadowlark

    meadowlark Senior Member

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    I think Alex has the right of it.
  7. anniekim

    anniekim Senior Member

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    Thanks for this article. I recall someone from the British charity, Me Association, saying that this funding has come about due to a change in the person who heads the MRC. This new guy is supposed to be more sympathetic to M.e.

    I echo what others have said that the Pace trial results are still being presented as more favourable than they are which is a worry. Again someone from the m.e association fears when the NICE guidelines ( our NHS treatment recommendations for various conditions) for m.e are due for renewal in 2013, he fears they wil use PACE to continue suggesting GET and CBT as first line treatments. I know people wrote detailed criticisms to Lancet who published the pace results, all of which were ignored apparently

    Anyway, for all this, the recent announced research is a small step in the right direction which is encouraging....
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Can we find out abit more about this new drug for sleep that improves deep stages of sleep etc. SOunds alot like xyrem but who knows???
    I want some! if it does what they say it does.

    cheers!!!
  9. currer

    currer Senior Member

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    The psychiatric lobby is immensly powerful in the medical establishment in Britain. My impression of the ME charities here is that (certainly AfME) are terrified of them. It does not seem to be only a medical debate - even if it is being presented as such.
    My consultant, who worked for many years trying to change the sad position ME sufferers are in in Britain, told me that the politics in this field are massive.

    I doubt that this small amount of research funding can do much to change a fixed policy which does not exist because of genuine medical issues to do with ME but has its origin in political expediency.

    However it would be nice to be proved wrong. It is just that over the years I have seen false dawns so often.

    Action for ME do not have the courage even to promote the rituximab successes. They are terrified of challenging the medical establishment , even with such good data on their side. They suffer from moral cowardice.

    Their medical advisor signed the Van der Meer response to the PlosOne publication.
    http://www.plosone.org/annotation/l...notation/43f3e6a8-cf7d-4438-8b97-b21b9c31bf5c
    What kind of medical charity is that?

    My observation of this and other disgraceful equivocations have led me to the opinion that Action for ME are part of the establishment that works to maintain the "status quo" in this illness. The British political classes are adept at keeping everyone moving in a circle whilst talking as if progress is just round the corner.
    It is a charade - but now we have the opportunity to see through it.
  10. pollycbr125

    pollycbr125 Senior Member

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    ripped off yet again

    The UK government despises people with ME/CFS . People are denied benefits , denied care that they need and portrayed in the press as either lunatics brandishing knives and sending death threats to scientists or lazy bone idle gits who all they need is a kick up the backside to get them back to work .

    This money was supposed to be ringfenced for biomedical research into ME so why is some of it going to Sjgren syndrome ? thats not chronic fatigue syndrome and it certainly isnt ME .

    why is some of the money going to psychologists ? I thought this was for biomedical research ?

    The only study to be honest which I have any faith in is Julia Newton .

    There is nothing here that is going to find a cause for ME . This money was supposed to be for that reason I really do feel we have been well and truly ripped off yet again .

    We need to be looking at causation not single symptoms like sleep which to be honest someone with genuine ME would probably list way down on their symptom list . with pain , cognitive disfuntion , infections , muscle problems and control ranging far higher . We need to step away from 'fATIGUE ' this illness is far more complicated than mereley being a bit tired . Having a good nights sleep makes bugger all difference to my other symptoms .

    Do you realise the 1.6 million actually equates to 6.50 per head per person in the UK with ME/CFS . that equates to a meal at KFC or a ticket to the cinema for fit and healthy people . or you might get 3 loaves of bread and a bit of change left over or perhaps be able to buy a piece of meat for sunday dinner though way prices are going up the piece of meat may be out of price range now .

    Thats what this money eqautes to . yet how much was wasted on the pace and fine trials . millions . The pace trial is seriously flawed and should be retracted . will it be will it hell . the fine trial was a flop . All that money millions wasted and were supposed to be grateful for 1.6 million that theyve managed to share out to include psychologists and an illness that isnt ME or CFS .

    How can anyone seriously think this government is turning over a new leaf . We are at the bottom of the crap pile as per usual and will remain there until the NICE guidelines are changed , theres research looking at the whole disease and causation , people are awarded the help and benefits they so deserve , the press starts reporting on ME fairly without bias and the likes of wessely and chalder are as far away from ME/CFS research as possible .
    lilpink, Wonko and currer like this.
  11. Sasha

    Sasha Fine, thank you

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    It would be interesting if it was Xyrem. I asked my NHS sleep specialist about it a couple of years ago because Nancy Klimas had had success with it in a clinical trial and he said there'd be pretty much zero chance of getting it prescribed - I can't remember now whether it was because of the expense or because it can so easily be misused (it's a date-rape drug under another name, I think).
  12. kermit frogsquire

    kermit frogsquire

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    Lip service and stolen research!

    I have to completely disagree with everything that Cort has written. Nothing has changed in the UK. The latest round of funding is an absolute sop to patients with ME. All of the proposed studies, except the one by Dr Julia Newton, will use the Oxford criteria. For anyone that doesn't understand, the Oxford Criteria means that depressed, anorexic, and mentally ill patients with no post exertional malaise will be selected. And worse still is that two of the studies are not even on ME patients but so called "related fatigue states".

    Although the evidence that ME is physical is now overwhelming, no one knows what causes it, therefore to study other conditions because of a claimed similarity to ME is absolute balderdash, how are they similar if no one knows what ME is? This money was suppose to go towards finding out more about ME, not spending on vague fatigue like mechanisms in other conditions. This is similar to the theft of ME research funds at the CDC for pet projects, except the British like to take dishonesty to a higher level - by even being dishonest about their dishonesty. Would Lupus, MS, HIV patients get wishy washy sleep studies, grape seed extract studies (polyphenols) and the like. No they would get serious research with Rituximab and other immune therapies, and immunoglobulins, things that have been proven to work. Also if ME is so much like Sjgren syndrome that it warrants spending precious little funding designated specifically for ME, and since we know that IV immunoglobulin and Rituximab are effective treatments for severe Sjgren syndrome, why aren't ME patients allowed IV immunoglobulins and Rituximab?

    Someone wrote an exceptional review of the projects which I will repost below - has anything changed... I think not, we are just getting lip service.

    ---------

    Upon reading the proposed MRC research projects for ME, I was dismayed to see that only one could really be described as fitting the description of biomedical research into ME.

    Given Professor Holgate's insistence that the money would be u...sed for this use only, and his apparent concern that ME research be moved forward, I cannot understand how this has happened. Below I have outlined concerns over each individual study.

    1. Identifying the biological fingerprints of fatigue - This is in actual fact a study on Sjgren syndrome which has nothing in common with ME other than that both conditions have "fatigue" in the most general sense of the word. This is the same as studying migraine and claiming to study brain tumours because both cause headaches. Fatigue is a symptom of almost every medical condition and therefore using this as an excuse to study other illnesses is not justifiable. Why not study the immune parameters (as they are going to do in this study) of ME patients? It just makes no sense.

    2. Modulation of aberrant mitochondrial function and cytokine production in skeletal muscle of patients with CFS by supplementary polyphenols. - The same point can be made again that mitochondrial dysfunction is a symptom of many chronic illnesses and not unique to people with ME. This study is going to try and treat people using supplements such as grape seed extract. If this kind of intervention worked, all ME patients would be well by now as we have all tried grape seed extract (and wasted money on hundreds of other supplements).

    3. Can enhancing slow wave sleep SWS improve daytime function in patients with CFS? - Whilst at first glance this project may seem to be of value, again all chronic illnesses cause dysfunction of slow wave sleep, including epilepsy. Pharmaceutical measures to correct this have almost never been successful because the drugs are just too dangerous to be used long term as a symptomatic treatment.

    4. Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome. - This is possibly the most objectionable study in that again it is not looking at ME patients. The study will "follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue". In actual fact ME patients have in the past have been treated with IFN-alpha and found their fatigue improved, showing that the biological changes induced by IFN-alpha have nothing to do with the "fatigue" of ME (research by John Chia - Alpha 2a interferon significantly increased quality of life scores and natural killer cell functioning in ME/CFS patients with reduced NK cell functioning in a 1994 study. Dr. Chia reported another small early interferon study by Brook et. al. was successful as well. )

    It is simply not acceptable for the money that was supposed to go towards ME research to go to a hotch potch group of vague studies that merely look at "fatigue" in a variety of conditions. What Professor Holgate and his team do not seem to appreciate is that ME is not fatigue. Until this basic point is understood, there will be no progress. The unique symptom of ME is an increase in symptoms after exercise (where "exercise" can be as little as getting dressed or drying ones hair for some people). Symptoms can range from flu like (swollen glands, sore throats, general weakness) to cardiovascular (missed heart beats, racing heart) and neurological (dizziness, blurred vision, heightened sensitivities to sound and light, and even seizures). Patients have these symptoms ALL the time, often even at rest, but will experience an increase after any activity. The specific increase of symptoms in patients with ME is measurable with the repeat two day VO2 Max stress testing. This is unique to ME, and therefore as repeated above, studies on Hepatitis C patients and Sjgren syndrome will yield no useful information. Reserach on VO2 max stress testing is now accepted in the USA as the best objective repeatable measure of incapacity - please see the following research.

    http://niceguidelines.files.wordpre...ndings-with-repeat-exercise-testing-in-me.pdf

    Only the Canadian Consensus Criteria and International Criteria accurately describe these symptoms of ME and therefore should be the only ones used. Not one single study in the UK has ever used this criteria. Psychiatrists who purport to study ME use the Oxford Criteria which simply describes fatigue. An illness cannot be studied unless it is accurately defined.

    I cannot even get close to describing my frustration over this most recent funding announcement. The initial press release detailing this 1.6 million funding was a source of hope for many, which has now been dashed. There was hope that somebody might follow up the Norwegian findings which pointed to ME being an autoimmune condition, but this has not happened.
  13. jace

    jace Off the fence

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    Polly, it's not just that one of the studies is on Sjren's Syndrome. Another is on Hep C patients. Two are lead by shrinks. Even McArdle could be using Fukuda or Oxford to study Tired All The Time people (eg. see Julia Newton's clarification of misdiagnosis here)

    The Newton study is the only one that is definitely studying ME/CFS. One, out of five. So it goes. We Brits should be grateful for small mercies - not.
    lilpink likes this.
  14. Firestormm

    Firestormm Content Team Lead

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    Interesting article and take on the funding announcement Cort. Your concluding paragraph adds a rather intriguing angle to the funding decisions that I personally had not considered before.

    Imagine 0.5% of your NIH budget on CFS/ME!! Staggering compared to what is spent currently!! Mindblowing in fact!!

    Anyway, good to see you covering this one. Am still researching Sjoren's Syndrome and I did enquire with the Professor; but of recent note perhaps was the study linking (again) MS to EBV. Of course MS isn't the only condition to be so linked - Sjoren's is another as is CFS/ME. It will though be interesting to see/hear more about the actual research studies themselves in due course.

    In general, I welcomed this news and the interest shown by Professor Holgate and his CFS/ME Expert Group. I also happen to think you are right about the aftermath of PACE - rather lukewarm indeed. Then again NICE don't review until 2014 I believe - so we will have perhaps a better idea of their reception then.
  15. pollycbr125

    pollycbr125 Senior Member

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    sorry Jace I meant to put that in mine but you know me when I get on a rant I have to write down what pops in my head else I forget stuff hence i went off on a tangent and forgot that woops .

    I did say the only study to be honest which I have any faith in is Julia Newton

    The fact that this study equates to so little per head 6.50 then to find most of it has been conveniently syphoned elsewhere makes me really angry .

    like I said nothing will change until the NICE guidelines are changed , theres research looking at the whole disease and causation , people are awarded the help and benefits they so deserve , the press starts reporting on ME fairly without bias and the likes of wessely and chalder are as far away from ME/CFS research as possible .
    lilpink likes this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    each country in the western world has to re-invent the wheel for themselves, maybe the Britts are re-inventing the wheel, hopefully its round.

    cheers!!!
  17. sianrecovery

    sianrecovery Senior Member

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    without wishing to seem paranoid, and having some awareness of the potentially excellent ME related research projects MRC has chosen to squash, I think the best we can hope from this is a glimmer of awareness among a select group of researchers in the UK that ME is real and debiliating. The hegemony of the pysch establishment works well to keep the treatment of ME relatively cheap at a time of rapidly shrinking NHS resource. The mortality attached to the disease is just not great enough to push through this stranglehold. I feel a great sense of weariness as I type, because I so wish it were not so. But it is, I think.
    currer likes this.
  18. currer

    currer Senior Member

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    Do you know, this is why I am so attracted to the retroviral research.
    I do not hope for a cure for myself any more. I never go onto the treatment threads here.
    Why?
    I have come to the conclusion that only a transmissible disease of some sort stands a hope of getting adequate research funding because no action will be taken unless there is a threat to public health.

  19. anniekim

    anniekim Senior Member

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    I agree action for m.e are awful. I used to be a member but have lost faith in them
  20. pollycbr125

    pollycbr125 Senior Member

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    I didnt realise comments posted here are not showing up on the main article which is here http://phoenixrising.me/archives/6834 so ive posted my comment there too perhaps others could do the same as there are some excellent comments on this thread

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