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A review of HHS actions - as I see it

Discussion in 'General ME/CFS Discussion' started by Nielk, Sep 29, 2013.

  1. Nielk

    Nielk

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    The way I see it

    Since the Lake Tahoe outbreak in 1980’s HHS including NIH and CDC have had an agenda:
    “Let’s try to make this illness disappear.

    They started by giving it the trivial name of chronic fatigue syndrome and they gave it a very vague definition which pretty much equated it the debilitating disease with depression.

    Since the HHS has pretty much stood ground with this agenda by giving the “appearance” that they are taking this seriously, they redefined the disease in 1994 with the Fuduka which was only a step above oxford. They have since then buried their boots and have consistently refused to adopt any newer, improved diagnostic criteria that were based on new research and scientific studies.

    To further give the image that they care about the patient population and are doing “everything” that they can, they formed a “federal” CFS advisory committee which has been named CFSAC since 2003.

    The reason I put “federal” in quotation is because that’s what it really is. It was formed, chartered and is controlled by NIH. They make the rules, they assign the agendas to the meetings and most importantly they chose who will serve on the committee.

    NIH has played games with us throughout those years:

    -funding available for this disease is less per patient than ANY other illness in history.

    -when repeatedly been asked to update the CDC website to reflect new knowledge about the illness, it falls on deaf ears.

    -when asked to accept the CCC diagnostic criteria instead of the antiquated Fuduka, they plainly say - no

    -when asked about increasing the funding for research, we are told that there are not enough entries,
    yet about 90% of entries get rejected.

    -the constant pleading for a name change from patients, advocates and CFSAC members themselves have never been answered.

    -The recommendations from voting CFSAC members have been collecting dust and by now for such a long list that even CFSAC members get confused. (i.e. nothing gets accomplished)

    So, all these years, HHS has been playing games, coasting along, giving the semblance of doing and caring when really they are just biding time till………a great opportunity presented to them!!!

    They saw what the Institute of Medicine did to Gulf War Illness!

    They saw how the IOM marginalized GWI and renamed it chronic multi-symptom illness (CMI). They basically explained that it is a psychological disease which warrants psychological interventions like GET/CBT and a prescription for anti-depressants.

    They realized that they can do the same with this illness which has been pestering them for so many years!

    They have been working behind our backs since early spring of this year. When I say behind our backs, I mean not just patients but, their own appointed voting CFSAC members. At the last CFSAC meeting in MAY, this was already well underway, but there was not even a whisper about this.
    On August 27th, was the first time that anyone (other than the government people) knew what they were up to. They announced their sole solicitation with IOM for a contract to redefine our disease.

    This was followed by a great outcry by the patients and advocates.

    HHS canceled this solicitation due to this great outcry.

    BUT……..wait….no they didn’t..they were just doing what they do –they were lying and..

    Of course, they went behind our back and they did sign a contract with IOM because….they do have to follow THEIR agenda.

    This caused an outrage from our own clinicians to the point where 35 expert clinicians and researchers signed and sent a letter to HHS stating their opposition to this contract and asking HHS to promptly cancel it.

    In addition there is a current push by advocates for patients to contact their representatives in congress to put pressure on HHS to cancel this contract.

    This is just a nutshell overview and of course my view of things.


    What do you think?
     
  2. Erik Johnson

    Erik Johnson Senior Member

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    North Lake Tahoe Bonanza

    Nov 16 1987

    "Incline Victims Show Cell Abnormalities"

    Tests Reveal New Clue in Fatiguing Illness

    by Chris Fotheringham
    NLTB Managing Editor

    Laboratory results published this week in a prestigious medical journal confirm that over 50% of Incline Village chronic fatigue patients tested have suffered "dramatic" abnormalities in their immune systems.

    Calling it the "most significant finding yet" in efforts to unravel the mystery of the widespread fatigue illness, Harvard researcher Dr. Anthony Komaroff said Monday the report published Sunday in the Journal of Immunology is the first scientific study that confirms "something is wrong with these people."

    "it is really dramatic." said Komaroff, who is chief of general medicine at a Harvard teaching hospital in Boston.

    The article, which underwent nearly 11 months of peer review before being published, was authored by Komaroff, Incline Village internist Dr.Daniel Peterson, and former Incline internist Dr Paul Cheney.
    Dr Michael Caligiuri, an immunologist with the Dana-Farber Cancer institute of the Harvard Medical Center, was the lead author for the article which was originally submitted for review in January.

    Komaroff says test results reveal an attack on the immune system's "natural killer cell" which is the body's primary means of killing virus-infected cells or cells that become cancerous.
    Komaroff said "There is a substantial reduction in the number of natural killer cells in patients tested." He said the study has determined that this "major defense against virus infection and cancer" is damaged in over half of the test cases involving Incline Village patients.

    Komaroff first broght his team of researchers to Incline Village in February of 1986 after Incline doctors Cheney and Peterson had documented an outbreak of approximately 200 cases of mononucleosis-type illnesses in the North Tahoe and Truckee area beginning in the fall of 1985.
    While the Incline Village cluster of fatigue cases has drawn primary attention in the national media, researchers have found widespread occurrence of the illness throughout the country.

    See TESTS on page 9.

    http://www.ncbi.nlm.nih.gov/pubmed/2824604
     
  3. Allyson

    Allyson *****

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    \


    great summary and well said Nielk, thanks for posting.

    Ally
     
    Nielk likes this.
  4. Keela Too

    Keela Too Senior Member

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    Seems about right Neilk
     
    Nielk likes this.
  5. Snow Leopard

    Snow Leopard Senior Member

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    What is the solution then?

    We need to unite internationally, with some sort of democratic structure and speak with one voice to reflect our needs: "what you have been doing is wrong", and tell them what we need to move ahead (I can't say what that is yet because such structure and discussion has not occurred). I'm ultimately imagining participation of 100,000+ people, due to the participation of many advocacy and support groups all over the world.

    Right now they claim that advocates and patients are demanding a million and one different things, so they use this as an excuse not to empower the community and instead just push on us what they think is best and we fail to attract and serious leadership for change.

    But something must change right?
     
  6. Keela Too

    Keela Too Senior Member

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    My view is that ME should be characterised by the Post Exertional Malaise we suffer after doing tiny amounts above our sustainable norms.

    PEM needs to become the one defining feature of ME so that future studies do not get watered down by folk who do not suffer from PEM.

    However, I don't think those of us who do have PEM should abandon those who do not have PEM. Rather, we should ask that the two groups are studied separately.

    There are likely to be other incredibly debilitating illnesses that are not also yet fully defined, and so we don't want to fall into the trap of accusing other sufferers of only having chronic fatigue..... if we do we are as bad as the psychiatrists who have tried to do this to ME.

    ALL fatiguing illness need attention - however the complications of PEM to treatment should mean that this group should in my opinion be investigated separately.
     
    beaker, peggy-sue and Valentijn like this.
  7. Nielk

    Nielk

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    Our expert clinica s and researchers have spoken with a vey clear voice. Will they be ignored?
     
  8. Andrew

    Andrew Senior Member

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    Notice the date of the study.
     
  9. Erik Johnson

    Erik Johnson Senior Member

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    Dr Komaroff's presence in Incline Village was no fluke.
    As told in Osler's Web on page 144, this was the work of Ted Van Zelst, whose daughter was stricken with what was then called CEBV Syndrome.

    Frustrated at the CDC's lack of motivation and disinterest in moving the science forward, Van Zelst brought Cheney and Komaroff together for the purpose of finding some immune abnormalities that would impel the CDC to swifter action.
    It was Ted Van Zelst's philanthropy that paid for this low NK cell study.

    The Van Zelst plan was an overwhelming success.
    The CDC took note, and were placed in a position where some gesture of deference to this evidence was necessary.
    This was our foot in the door. It seemed that victory was at hand, and now the CDC would take the disease seriously.
    But Stephen Straus had another plan. So audacious, and so contrary to science that we didn't believe back then that he would really do it.
    ------------------------------------------------------------------------------------
    "The individual is handicapped by coming face-to-face with a conspiracy so monstrous he cannot believe it exists." -J. Edgar Hoover
     
  10. readyforlife

    readyforlife Senior Member

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    To further give the image that they care about the patient population and are doing “everything” that they can, they formed a “federal” CFS advisory committee which has been named CFSAC since 2003

    I had no idea that CFSAC was started in 2003.…ten years of what?? Can anyone tell me what they have done for us in the last ten years?? I’ve only been aware of them for the last couple of years.

     
    I think we need to keep pushing for our rights. I think the key to CHANGE is going to be from us. We are the ones stuck in our bodies and nobody knows the importance of a breakthrough drug for our conditions better than us the ones suffering. How we do it I have no idea.

    We need to focus on one thing and keep pressure on our government. Right now that one thing should be this IOM contract. Then we need to pick something else that is important to our community. The sad thing is I don’t know how much contacting my senators and representatives for my state is helping. I have not received one response or acknowledgement from them stating they even received my emails.

    The key is some how getting more people from our cfs/me community involved. Right now there is a lot of people posting on Phoenix rising on all types of subjects. I know I’m guilty of focusing on only one area of the forums and not branching out and getting involved or reading about advocacy. It so much easier to just focus on forums about symptoms, treatments or doctors etc. I’ve really never branched out from those areas until recently with the IOM contract, Exercise study being done by the CDC and CFSAC meeting shortened and held over the phone. These issues have me mad and wanting to do something. I’m not a great writer or speaker but I can copy, paste and email.
     
  11. Esther12

    Esther12 Senior Member

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    I have to admit that I wasn't really paying attention to this bit. Is there any link to news about HHS cancelling the contract?

    Does seem like this is a sketchy stitch up, that could well screw us over quite badly.
     
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  12. Nielk

    Nielk

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    One of the reasons that I posted this is because I am afraid that many patients do not know what's going on. We have been really abused by this system and if they are free to go which is most likely, it will be too late to turn back.

    The time to act is now!!!! I'm trying to galvanize patients here into action.

    -We can keep writing to HHS letting them know how we feel.
    -We can write our representatives in congress to put pressure on HHS.
    -If our clinician was not on the list of 35, we can ask them why?
    -We can call and thank the ones who did take the action to write and sign the letter to HHS
    -If we feel that CAA has let us down and are not acting in our benefit, we can let them know about it.
    -If we are upset about NIH letting us down by controlling CFSAC we can let them know.
    -If you care that at this dangerous juncture, the next CFSAC meeting has been shrunk and will only be a webinar, voice your anger!

    Are we okay with being ignored? If they are not listening, maybe we just need to talk LOUDER?

    Any other suggestions?
     
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  13. Erik Johnson

    Erik Johnson Senior Member

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    I have a suggestion.

    Remind the CDC that they did see this low NK evidence in the outbreak which was the subject of the Holmes investigation, which culminated in the creation of a syndrome, and ask them why it was not followed up on.
    -----------------------------------

    Simmaron Research shared a link.

    September 18

    25 years ago, Dr. Daniel Peterson published groundbreaking clinical observation of low Natural Killer Cell function in CFS patients. Today starts the NK2013, the Annual Meeting of the Society for Natural Immunity, in Heidelberg, Germany. ME/CFS patients need NK science, and Simmaron is making it happen!
    http://nk2013.com/

     
  14. Firestormm

    Firestormm Guest

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    I have heard several figures being bandied about for the cost of this contract with IOM. Does anyone have any confirmed figures please? Estimates have been seen for as much as $1million. Don't they have to publish such data somewhere? Thanks.
     
  15. readyforlife

    readyforlife Senior Member

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    I think all of your suggestions are great!! As I've said before that i'm not a great letter writer. It would be great if we had letters to copy and paste to send for the above issues. I just sent a short note to CAA and HHS telling them how I feel. I've been sending letters daily to my congressman and representatives. I know asking someone to write letters for us to copy and paste is asking a lot. But if someone is really good at it and can whip out a few that would be great. The letters we have already for the IOM issue is great and I will continue to use that letter to send out for that issue.
     
  16. readyforlife

    readyforlife Senior Member

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    I'm wondering if our congress men and women even have time to deal with our issues with them dealing with the possible government shut down. Also is the HHS to busy to deal with us with the new Obama care rolling out on October 1st. Just random thoughts.
     
  17. Nielk

    Nielk

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    That is a real worry.
     
  18. readyforlife

    readyforlife Senior Member

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    Firestormm likes this.
  19. Firestormm

    Firestormm Guest

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  20. Nielk

    Nielk

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    Thanks readyforlife. How interesting what a couple of days..a letter...or some phone calls can accomplish. Bateman was one of the signatories on the letter of 35.
     

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