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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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CFIDS Association asking expert signatories about their current position on endorsing the CCC

Discussion in 'Institute of Medicine (IOM) Government Contract' started by justinreilly, Sep 28, 2013.

  1. alex3619

    alex3619 Senior Member

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    To add to Ecoclimber's point, do recall that the CDC has refused to remove the recommendation for CBT/GET on its site, despite a complete lack of objective evidence for its efficacy. The system is broken, to put our faith in it is a bad idea for now.
     
  2. alex3619

    alex3619 Senior Member

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    As a complete hypothetical and opinion at this point, I think economic forces drive a lot of these changes to health management. At a time of severe economic limitations the voices of austerity are very loud, despite that they have an historical record of absolute unmitigated failure during economic recessions and depressions. Gotta balance the books, slash the budgets etc. translates to lets trash the economy.

    Similar worry over rising social security and medical costs in society drove these decisions for about three decades now. Rather than analyze and solve problems, rather than invest in research to create solutions that address causes, this has resulted in a global push to use management practices to contain the problem at public expense, and particularly at the expense of the old, sick or disabled. Dogma and ideology have dominated this situation, reinforced by political rhetoric and simplistic spin, and financially backed by companies and individuals with vested interests.

    In case there is any doubt, on economic matters I am currently a Keynesian. In terms of the US I think the biggest threat to the US today is not terrorism, its poor economic management since the 1970s. This needs to become a dominant political focus, and sacred institutions like the military industrial complex, health insurance and providers all need to be closely and transparently examined.
     
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  3. Hermes

    Hermes

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    HHS and IOM contract - New Strategies

    The main lesson from all of this is the American political system (and European political systems) is based on money, campaign contributions, lobbying and wealth centred networks. This sets the agenda and pre-determines all outcomes. The proof of this lies in the fact that our emails, letters and phone calls to Congressmen and Senators and to the HHS Secretary and to NIH and CDC were ignored and fobbed off. It is now very obvious that HHS Secretary Sebelius has been briefed for the last few weeks and months by "advisors". The agenda of these "advisors" is not entirely clear yet. But extrapolation from the Gulf War committe of the IOM gives us some clues. It strongly suggests, but does not conclusively prove, that these "advisors" desire a certain outcome. One which reduces payment liabilities for health insurance companies (to ME patients), reduces government payments for diagnostics and treatments (for ME patients) through Obama-care, reduces government disability payments, maintains the income and bonuses of psychiatrists and psychologists, maintains their somatic syndromes nonsense, increases profits for big (psychiatric) drug companies, and one which continues the lie first formulated by Dr. Straus and then continued by Dr. Reeves of CFS being a so called "fatigue illness", thus preserving the reputation of the NIH and CDC and preserving the careers and status of those in the NIH and CDC. The "advisors" are linked directly and indirectly to these aforementioned factors. A case of self interest at every level.
    To achieve their desired outcome these "advisors" have conducted their affairs in secret behind the backs of CFSAC and patients and ME / CFS organisations. They then lied about the IOM contract. The "advisors" have adopted a divide and conquer approach ; this was successfully used to build empires in the past. This divide and conquer approach works as follows. They will recruit 1 or 2 ME doctors / researchers and enlist 1 or 2 representatives of one or two big ME organisations in the USA. They will form a small minority on the IOM panel. The IOM will use them to claim that the IOM is inclusive and open to the views of patients, when in reality they will be used as traitors,. The others on the panel will be carefully selected and will all be "yes men" and be told informally that their careers will depend on supporting the "right outcome". The IOM will claim that these people are "independent". They will represent a few fields including immunology, neurology, psychology, psychiatry and physiotherapy and primary care nurses.

    The "investigation" itself will be guided carefully by IOM. This guidance will proceed in a certain direction - psychiatry based. As part of their "investigation" they will look to Britain and see whats happening there. The NICE clinics will be examined. CBT and GET will be included in the IOM's "analysis". They will ignore the scientific evidence into the biological causes of ME / CFS and claim there is contradictory evidence, no biomarkers, and no replication studies to verify anything. The "investigation" will presume that there are no biological treatments for ME / CFS and especially no "evidence based" treatments based on double blind placebo controlled trials. How convenient for them that NIH and CDC refused research funding in this area and the FDA blocked certain medicines for ME / CFS. From this they will decide that nothing can be done for ME / CFS patients and that CBT and GET offer the best way to "manage symptoms". The new definition will be a regurgitation of the Fukuda criteria with some some vague language about possible (though not proven) immune dysfunctions, possible (though not proven) infections at some stage of the illness and possible subgroups, with recommendations for further research, which of course will not be funded. The final outcome, which was determined before the investigation began, will be much the same as the vague, psychology centred "multi-system illness" invented for Gulf war syndrome.

    The objectives of Secretary Sebelius' "advisors" will be achieved ; this being
    an outcome which reduces payment liabilities for health insurance companies (to ME patients), reduces government payments for diagnostics and treatments (for ME patients) through Obama-care, reduces government disability payments, maintains the income and bonuses of psychiatrists and psychologists, maintains their somatic syndromes nonsense, increases profits for big (psychiatric) drug companies, and one which continues the lie first formulated by Dr. Straus and then continued by Dr. Reeves of CFS being a so called "fatigue illness", thus preserving the reputation of the NIH and CDC and preserving the careers and status of those in the NIH and CDC. The "advisors" are linked directly and indirectly to these aforementioned factors. A case of self interest at every level.

    (Show this to Dr. Lucinda Bateman)
     
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  4. taniaaust1

    taniaaust1 Senior Member

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    Im personally against doing any such thing at this point of time for the reason being it is the wrong time for something like that. We all NEED to be ONE POINTIVELY FOCUSED on the IOM contract and not have the focus there being watered down by split focusing on different issues. Its best to fight hard one battle at a time.

    What I'd like to see if a second letter coming from other doctors/specialists/researchers backing up those first 35 and calling too for the OMI contract to be cancelled. A second letter if someone in the medical profession could start it and have other medical professions willing to sign.. it really would probably be the straw breaking the camels back one could say. I want to see what those first 35 have started, snowball. I want to see support for those brave souls willing to speak up about things.

    Maybe those who see a ME/CFS specialist who would be supportive of those others and the cause bring this up to their drs and ask them to start up another group letter to gather medical signatories, a letter we could advertisse about here, for people to take the info on its existance to their own ME/CFS specialists for them to hopefullly add their names too as well.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    I personally believe that could be their plan, to merge GWS with CFS to help make GWS further "vanish" as we know they are trying to do. GWS due to its name, gets too much serious sympathetic public attention for them, so change the name and what about watering down the definition (which they've all done) and then oh wow, we've discovered its the same as so merge it with an illness no one takes seriously ... CFS.

    I think we should all pledge to NEVER use THEIR crappy name for GWS and always call it Gulf War Syndrome, in protest of them trying to "hide" illnesses and to support those who did get GWS in the war.

    Even if CFS and GWS are the same (maybe those who get CFS from toxins/chemicals have the same illness?), I'd still like to see them kept separate as that will keep causing this group to be researched separately. I believe GWS may be a subgroup of CFS and if merged, it may (or rather probably will) stop research into that subgroup. We need all our subgroups being researched separately!! It's important to not water down the subgroups and make sure things dont go backwards.
     
  6. Ecoclimber

    Ecoclimber Senior Member

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    @Hermes
    You're right on target.

    In addition to the open letter by ME/CFS reseachers and clinicians, if the 35 researchers/clinicians would contact prominent primary full time lab researchers who had conducted ME research to offer their support by going on record adding their signatures to the open letter, it would go a long way to undermine any psycho-somatic agenda by the IOM and DHSS.

    If they could add the signatures of Dr. Huber of Tufts and any of her colleagues, Dr. Lipkin, Dr. Levy, Dr. Hornig, Dr. Anthony Komaroff, Dr. Benjamin Natelson, Dr. Christopher Snell, Dr. Dane Cook, Dr. James Baraniuk, Dr. Gordon Broderick, Fluge/Mella etc.

    Eco
     
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  7. Nielk

    Nielk

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    If you would like to thank the clinicians and researchers who signed the letter to HHS please sign this petition.
     
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  8. akrasia

    akrasia Senior Member

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    Ecoclimber wrote:

    If they could add the signatures of Dr. Huber of Tufts and any of her colleagues, Dr. Lipkin, Dr. Levy, Dr. Hornig, Dr. Anthony Komaroff, Dr. Benjamin Natelson, Dr. Christopher Snell, Dr. Dane Cook, Dr. James Baraniuk, Dr. Gordon Broderick, Fluge/Mella etc.




    Eco,

    The more the merrier but a small correction: Gordon Broderick and Chris Snell signed the letter.
     
  9. Sasha

    Sasha Fine, thank you

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    Do you think that needs its own thread so people are aware?

    Just signed - can't see my message but maybe it will turn up later.
     
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  10. alex3619

    alex3619 Senior Member

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  11. JT1024

    JT1024 Senior Member

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    Signed. I'm done with the crap.
     
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  12. asleep

    asleep Senior Member

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    Thanks beaker. I did see this and have signed it.

    While it is a good letter and expresses deserved gratitude, my concern is that it's not really even a petition. As far as I can tell, it's not being sent to Sebelius or anyone else in a position to act. How might it affect change beyond perhaps encouraging some signers to stand their ground more firmly (and will this even matter if the CAA manages to succeed in its goal of further decimating the list of signers)?

    Do you think it is problematic in that it will prevent people from signing? You are right that there is certainly a tradeoff between the aggressiveness of a petition and its potential reach.

    If there's one thing this community is good at, it's choosing to continue playing softball while everyone else is clearly playing hardball. This has to change or nothing will ever fall in our favor. We have to start acknowledging that we are not dealing with large, hapless, ignorant agencies that will gladly help us if we just provide the right incentive. These agencies are working diligently, right before our eyes, to bury once and for all any hope we have of real medical research and intervention.

    My hope is that this issue (IOM contract), especially if explained fully and clearly enough, will ignite enough of the community to finally draw a hard line and say enough is enough.

    I recognize that (online) petitions probably don't mean that much. That's why I think it needs to include a declaration of concrete consequences for those who cross the line, even if that will discourage some from signing. We can no longer afford to support "friends" who take every opportunity to sell us down the river for a slightly closer seat at our own hanging.

    It could even serve as a good litmus test of which organizations truly support patients: if they are willing to encourage their supporters to sign then they are in a sense putting some of their future security at stake. (Granted, this litmus test wouldn't really apply to the CAA, since their mysterious sources of financial support have allowed them to persist for quite some time in spite of large opposition from the patient community.)

    Are you objecting to the idea of having two separate petitions at once? Would you support just the first petition?

    While I do think that it would be powerful for many voices in the community to disown the CAA in no uncertain terms, I think I agree with you that it's probably best not to divide focus at this point.
     
  13. Ecoclimber

    Ecoclimber Senior Member

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    Know who are giving to and the effectiveness of the organization to advocate for your cause! Make sure the organization can be entrusted with your donations and to maximize the income to advance the cause for ME/CFS research

    For the year 2011
    Taken from Charity Navigator Rating
    CFIDS Association of American or CAA IRS FORM 990 EIN:56-1683450
    Rating OVERALL 2 stars out of 4 Score 48.38 out of 70
    Financial 1 star out of 4 Score 39.70 out of 70

    Total Revenue $1,219,911
    Total Compensation Salaries, Wages, Compensation, Pension $ 989,755
     

    Attached Files:

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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Im curious why, if the commitees' time is donated, the IOM is a non-profit that has a development department which solicits and receives large donations, they have economy of scale (by doing hundreds of these reports a year), why does a report like this cost around $1 Million? They reimburse panelists expenses, I'm sure, have paid staff and other overhead, but $1 Million seems very excessive. Are the panelists reimbursed for first class airfare, five star hotels, luxury car rental, lavish meals, etc? And where does the rest of the money go?

    What a waste, when this could go to research.

    Another thought, which is perhaps obvious, but Vernon gains some not-immediately-monetary benefits from being on the GWI and CFS (reportedly) committees, much in the same way a Simon Wessely gains from doing the insurance companies favors by claiming ME is psychogenic.

    If Vernon and Friedberg contribute to defining GWI and CFS in a muddled and inaccurate way, as HHS very much needs them to do, they gain favor with HHS which will be rewarded with NIH grants. If Vernon brings in Millions of dollars in NIH grants to CAA, she will get a substantially higher salary. She also has an assured job and promotions back at NIH and CDC if she wishes to return there.

    Committee membership probably also makes it much easier to become an actual full member of IOM which is very prestigious and can be used as a credential for getting high paying and high powered jobs, plus it is an ego boost.
     
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  15. Nielk

    Nielk

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    That's what makes the letter from the , 35 34 experts that much more impressive. They took this action at personal risks. They stood up for us, in an action that they found grave enough to be willing to take that risk. I think that says a lot for the state of affairs.
     
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  16. Ecoclimber

    Ecoclimber Senior Member

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    ME/CFS clinician/researchers state how nearly impossible it is to find NIH grants to fund research into the cause of this illness.

    HOWEVER:
    Fred Friedberg, a psychologist and President of the IACFS/ME has been receiving signifiant amounts of money from various NIH institutes for the study of coping techniques for “ME/CFS”:*

    Both Suzanne Vernon, Scientific Director of the CAA, and Fred Friedberg, President of the IACFS/ME, are on the IOM committee for the disease definition of what’s tragically now called CMI. Neither Vernon nor Friedberg are experts on the disease. Both are on the NIH Special Emphasis Panel (SEP) that reviews grant applications for “ME/CFS,” an extremely powerful position to hold. Fred Friedberg is a psychologist who has been receiving signifiant amounts of money from various NIH institutes for the study of coping techniques for “ME/CFS”:*

    Fiscal year 2008: $230,603 from NINR, ”Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 1R01NR010229-01A1, State University of New York Stony Brook

    Fiscal year 2009: $230,603 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-02, State University of New York Stony Brook

    Fiscal year 2010: $228,297 from NINR, “Fatigue Self Management in Primary Care, Efficacy, Credibility and Economics,” project #: 5R01NR010229-03, State University of New York Stony Brook

    Fiscal year 2011: $259,641 from NINR, “Efficacy of Home-Based Self-Management for Chronic Fatigue,” project #: 2R42NR010496-02, Warren Stress Management”

    Fiscal year 2011: $66,864 from NICHD, “Efficacy of Home-Based Self-Management of Chronic Fatigue, ” project#: 2R42NR010496-02, Warren Stress Management

    Fiscal years 2012/2013: I am unaware of the amount of funds Dr. Friedberg may have received for fiscal years 2012 and 2013.

    Information provided from: http://thoughtsaboutme.com/2013/10/03/spinning-around/

    Eco
     
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  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree with everything you said. Jeanette replied to me on her blog that someone she trusts is apparently working on someway that people can endorse the letter from the 35 experts. I am hoping it is more than just this thank you letter from Mary Dimmock. Though, Pls sign that too!
    http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/
     
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  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Ecoclimber - And I remember something like 6-8 months ago a new NIH grant of $500-800,000 was given to Friedberg to study coping with fatigue.
     
  19. chronix

    chronix

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    We really need to oppose this IOM contract with all we have. It seems to me the IOM is being used as some kind of Final Solution to the CFS/ME/GWI problem. They are pursuing their goal relentlessly, the GWI patients having been their first victims.

    I don't see any good faith behind their dealings. They have it in for all of us!

    Don't let this happen!
     
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  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hey Eco, Thanks for contacting the senators and staff. Can you give us details on that. Im very interested in getting more involved in lobbying congress beyond sending emails. Was it just a matter of calling up and asking to speak to the senator? Did you actually get to speak to a senator in person? Anyway, good for you.

    Wondering if you remember the sources for your comments on the broken promises that HHS told about the GWI IOM contract? was the SOW similar? It would be really powerful ammunition for us to convince people if we had those specifics.

    Thanks!
     
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