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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Article: FINE

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 3, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Sherby

    Sherby Sherby

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    Thanks for this post Cort. The mind boggles the amount of money just been thrown at the UK psychiatric theory. Does anyone know how much money in resent years has been spent on psychological intervention of CFS? compared to proper physiological investigations.

    I'm from the UK and have had to watch in silence as the likes of wessely and white whitewash the health system.My specialists are constantly trying to talk me into there CBT GET crap, which i polity decline. I have to attend there clinic because is the only way of getting medication.

    I think that the PACE trial will differ and the results will be more on whites side as they will be using magic pens!!!!
     
  3. Cure_ME

    Cure_ME

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    I am astounded at how the UK Government Department of Health has been continually duped by Psychiatrists to commit vast sums of taxpayer money into useless psychiatric research into what is in fact the biomedic illness ME/CFS. How can we rid our community of this pestilence?
     
  4. Cort

    Cort Phoenix Rising Founder

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    I imagine, and many would know better than me, that the percentage of psych dollars being spent by the UK government, on ME/CFS is probably near hundred percent. In the US a far lower percentage of federal dollars are spent on psychological studies. Still, compared to other diseases only a very very small amount of money is spent on CFS at all and that is the major problem -until researchers get a good grip on the key physiological problems in CFS - the money devoted to it is probably going to be very meager. Of course its pretty darn difficult to get a grip on the key physiological problems in CFS when you're not spending any money on it!

    XRMV could be that 'in'; if it works out it will be that 'in'. If the research community finds loads of XMRV in CFS and not in healthy people - that would be the easiest way to rid our community of this 'pestilence'.
     
  5. Kelly

    Kelly

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    I think it all comes down to the unwillingness of viruses to go along with behavioral therapy. Independent little buggers. :D

    More seriously, this study could be used as ammunition to head off the CDC's planned version of the PACE trials. Perhaps that might come out in the May CFSAC meeting. It will interesting to see what Dr. Unger has to say.
     
  6. Cort

    Cort Phoenix Rising Founder

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    :D:D:D

    Good point - its going to be fascinating to hear what Dr. Unger is going to say. The CFSAC meeting is our only place to go where we know the feds will be publically questioned.
     
  7. Sherby

    Sherby Sherby

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    Fine

    I know what you are saying but i cant believe that our UK government doesn't know that there is a real disease process going on. Its far easier to turn a blind eye and let the blinkered Psychiatrists cover this up. Hopefully the latest PACE trial will flounder. But going on there efforts the last 20 yrs i believe we will be put through there CBT grinding stone before there done. I think only then when thousands of individuals are made severely worse will the real disease process be taken seriously. The more they push there psychiatric views eventually they will trip up when their statistic's fail to accomplish.

    What can be done about it until then? With the information made available from the likes of Cort and crew(with much thanks)at least we are able to see what's going on and what's about to happen. Knowledge is power. we are able to individually defend ourselves against these so called Psychiatrists doing it for our own best interest! Reeves has been removed but still lurking in the background. Our own Wesley is the one hard to get rid of.Reeves is nothing compared to Wessley. Wessley seams to have ultimate power in keeping this under his wing. He seems to answer to no man and i suspect his roots are deep within Government Power. But who can prove it. Then across the pond there's XMRV. Even if is finally proved to cause ME symptoms ,I'm sure there will still be a fight on our hands in the UK for many years to come.

    Hey Cort, I dint realize that Your CDC had its very own PACE trial going on. Were the UK psychiatrists involved at all.?
     
  8. Cort

    Cort Phoenix Rising Founder

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    I agree that Reeves has hardly the impact that Wessely has. However poorly it turned out at least Reeves concentrated on physiology and most of the researchers here in the US are focused on physiology not psychology.

    CDC has a CBT trial planned, I believe that incorporated with a brain imaging study (I believe). We should know more soon.
     
  9. Enid

    Enid Senior Member

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    Much enjoyed your observations Cort - I recall my brother emigrating to the States 40yrs ago (now rtd. University Prof. Neurology) saying "I'm so tired of the old boy network here - they even support each other when they know it is wrong". Says it all. He must have bumped into the Psychiatrics.
     
  10. serenity

    serenity Senior Member

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    brilliant! :)
     
  11. Kati

    Kati Patient in training

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    :innocent1:;):rolleyes: Good one Kelly!

    Also thank you Cort to shine the light on this issue.
     
  12. jerrycam

    jerrycam

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    >>>I imagine, and many would know better than me, that the percentage of psych dollars being spent by the UK government, on ME/CFS is probably near hundred percent. In the US a far lower percentage of federal dollars are spent on psychological studies.<<<

    I agree that the percentage of money spent on psych in the US is lower. But it still I believe the majority, and a fair amount has been siphoned off to other CDC (Centers for Disease Control and Prevention) projects or new stuff for other researchers. The CDC has been given the most research funds to date.

    But hopefully with Reeve's unceremonious exit, and the accumulation of positive studies from private resources and NIH (Nat'l Institutes of Health - the primary US gov't medical research organization) the attitude will change. This particular program is under the microscope at the present, and IMO Obama is at least intellectually honest and will not tolerate the kind of crap that Reeves et al were pulling.

    I also wanted to add that in any trial of this type, there is no possibility of a real blinding or the researchers. The nurses pursuing this study would naturally have a bias toward positive results, and would as a class tend to insert biases into the way the questions were worded, what feedback they gave, etc. That kind of bias could easily explain any positive result, and could even mask negative results - patients getting worse.

    Let's hope that this changes things - but not count on it.
     
  13. Countrygirl

    Countrygirl Senior Member

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    I read in a link on this forum that the Lib Dems are promising to fund biomedical research into ME. That gets my vote on Thursday at the General Election. Any one else?
     
  14. Adam

    Adam *****

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    Anyone know where the Monster Raving Loony Party stand on this issue?

    :D:D
     
  15. Adam

    Adam *****

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    Thanks Cort for another well balanced article.

    :Retro smile:
     
  16. Cure_ME

    Cure_ME

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    Vote LibDem

    I have already posted my vote for LibDems. Unfortunately, due to the inequality of the First Past The Post electoral system, my vote is unlikely to count as I live in a strong Tory constituency. I look forward to electoral reform though.
     
  17. Adam

    Adam *****

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    First past the post

    No offence to any fellow Brits on here who vote Tory, but please accept my my condolences Cure. :D

    Where I live they don't bother with a count as such. Not entirely true, as in fact they do tot up the number of wheelbarrows of ballot papers the Labour candidate received. And just put the rest in a bijou shopping bag. :innocent1:
     
  18. Mithriel

    Mithriel Senior Member

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    The UK government have spent 0 on the physiology of CFS so you can't do a ratio as the result would be infinity :Retro smile:

    Greg Crowhurst wrote that the fact the ME/CFS community were shocked that this trial gave a negative result shows how little we trust the establishment researchers. It was only when I saw that written down that I realised just how bad things are.

    Mithriel
     
  19. Marco

    Marco Old blackguard

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    With respect to your political views Adam lets not forget that Labour's record is far from Rosy. I don't want to drag this into party politics, but I claim the right to reply and it is relevant to the subject under discussion.

    Until very recently, the Guardian newspaper was a Labour Party organ, reputed to have close links with the Wesselyites and the only national daily in the UK not to have published a story on the original WPI Science paper (it did of course publish stories on the European 'rebuttals'). It was also the paper that hosted the good old Dr Crippen blog.

    It was the Labour party who commissioned the economist and Labour life peer Lord Layard to produce the report which set out the cost/benefits rationale underpinning the FINE/PACE trials.

    It was a Labour minister who approved DWP funding for the FINE/PACE trials (as the only clinical trial ever funded by DWP, the decision to do so must have been made at ministerial level, believe me).

    It is the Labour party who have replaced Incapacity Benefit with the Employment Support Allowance (ESA) with the publicly stated intention of cutting the number of recipients. ME/CFS has been specifically targeted for attention. In doing so, they are now using a private sector firm to assess recipients for their ability to work with payment for results being based on declaring the patient fit for work and nothing else. The patients own GP's comments are now not considered relevant.

    I'm not aware that the Conservatives (Tories) have said anything specifically on ME, I suspect not. However, during the present campaign, David Cameron has stated that the ESA system of bonus payments merely for declaring people fit for work is iniquitous and, if in power, the Conservatives would ensure that bonus payments are only made once ESA recipients are considered capable of working, placed in a job and able to sustain that employment. I'm sure many would agree that this is a much fairer system vis a vis those with fluctuating illnesses!

    The rationale for voting for any particular party, with sole regard to the interests of us PWC's, is therefore not clear at all. From my perspective, if I was able to vote in the UK general election, the current Labour party is not the Labour party of old and I would ensure that my vote neither directly nor indirectly kept them in power.
     
  20. Adam

    Adam *****

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    Apologies

    Hi Marco

    Sorry. I was having a bit of fun with regard the regional bias/family loyalties/long standing class bias towards Labour/Conservatives. But on reflection I agree it was both unwise and misguided. :ashamed:

    I did not vote Labour BTW and if the Lib Dems have said anything remotely encouraging then I applaud them. I was disgusted by the recent performance in the House when Gill Heron, Health Minister? replied to a question asked by a west country backbench Lib Dem about what the government were doing (not doing) re biomedical research.
     

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