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CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ecoclimber, Oct 5, 2013.

  1. Ecoclimber

    Ecoclimber Senior Member

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    Criticl Mass Needed!!

    For the patient community to succeed, CRITICAL MASS is needed to overcome the forces the arrayed against this community. Tom Hennessy advocated this strategy. Throughout the decades, this patient community had to the endure the psycho-somatic label placed on this illness. You had to suffer from the marginalization, scorn and disdain from the medical profession. We have the historic record on how the NIH and the CDC view this illness!

    Unfortunatley to date, there is not enough Critical Mass from this community to overcome the directives that are being initiated to redefine this illness. Statistics over the last couple of weeks prove this. Since the majority of scientific research is generated within the scientific community of the United States, this contract with the IOM will affect the worldwide ME/CFS commmunity.

    There is an extreme faction in Congress that wants to impose extreme austerity measures on social services. In reaction to these powerful groups, legitimate but controversial medical illnesses are being reclassified as psychiatric in nature so costly medical treatment and disability will be nullified.

    The ME/CFS researchers/clinicians who signed the open letter to Secretary Sebelius was unprecendented. They preceive the inherent consequences of the IOM contract. They knew that urgency was critical. We were all blindside by this IOM contract. This came out of left field.

    To date, only few hundred from the ME/CFS community have generated an interest in contacting various organizations. That's not going to cut it! The ME/CFS patients must send their objections by the thousands, or this cause will be lost. If the IOM can reclassified the definition of GWS to CMI over the objections of the powerful veterans group and a Congressional mandated scientific Research Advisory board, you can observe what the consequences will be for this community.

    What is needed is sending your objections to Office of the President, Obama, Vice President Biden, Secretary of DHSS Sebelius and to the board of directors of CFIDS, Pandora and Offer. I am not asking you to contact your representatives as their attention is fully focused on ending the budget deadlock and have no time to consider this issue. Most of their staff are on furlough.

    More important, members must contract other worldwide patient communities, patient advocates and forums in other disease categories soliciting their help. This would mean registering in their forums worldwide and posting a solicitation for help and linking back to this thread. I specifically asking you to contact the Gulf War Veterans, Lyme, Fibomyalgia, Lupus, MS, communities. You must impress on them that eventually, they will be affected as well. We need a coalition of patient groups to impact the decision makers. I know that many patients are too ill to perform these actions but if you can enlist family and friends to help.

    The social media must be inundated on Twitter, Facebook and the blogosphere.The pressure must be continuous. Otherwise, if the ME/CFS label is changed to CMI, then all funding for future medical research will be curtailed. This illness will not be treated by medical doctors or covered by medical insurance.

    If you post in other patient communities link to this thread or other threads that have pertinent information. I believe this is an excellent thread discussion on fallout from an IOM contract which is headed in our direction.
    http://www.mecfsforums.com/index.php/topic,17879.msg154981.html#msg154981

    We will not relent until we have guarantees in place that this illness will not be redefined as psycho-somatic and that the CCC or ICC-ME criteria be adopted. This is a serious as it gets.

    The future is in your hands. Critical Mass!

    Eco
    Izola, Helen, taniaaust1 and 2 others like this.
  2. Firestormm

    Firestormm Guest

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    I'm afraid your link don't work Eco mate. :thumbsup:
  3. caledonia

    caledonia

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    If you copy and paste the link, it works.

    One way to approach this is with a petition. If it was just ME/CFS patients, you could simply post the 35 ME/CFS doctors' letter and then have patients attach their signatures via the petition. When you got your goal then the petition would be sent to Obama or whoever.

    Actually I think Obama would be good, because he was the one who was approached about the government's poor reponse to ME/CFS, and he said he would look into it. Then he told DHHS to look into it, and this is the result. We need to tell him that this is horrible, and exactly the opposite of what we want and need.

    If you want to include the other patient populations, then a new letter would need to be drafted explaining the situation, and reference the GWI fiasco, and the 35 ME/CFS doctors' protest letter, and how these various patient populations are vulnerable to the same treatment, and how they don't want it.

    Probably wouldn't hurt to do both.

    I feel like this is a good start, but we need to do more...on the GWI thread referenced, they had gotten some press in USA Today. We should contact that same journalist for a start. Also any other journalists who post about ME/CFS stuff - I seem to remember somebody at the NYT.
    Delia and rosie26 like this.
  4. alex3619

    alex3619 Senior Member

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    I completely agree. We either address this now, or we fight even more battles than before for the next decade or more. I would suggest GWS sites are the first place of call.

    Barring a major scientific breakthrough followed by a decade of advocacy to make something happen, the current trend could mean no cure in my lifetime, nor for anyone over 50 with ME, and unlikely for anyone over 40. Those over 30 might get cured in time for retirement.
  5. alex3619

    alex3619 Senior Member

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    I think the current situation is way beyond any single petition unless we could get tens of millions of signatories. No ME petition in history has ever got that. We need to think big. Petitions are maybe 1% of what we need to do to succeed.

    We need to join with other groups who are likely to be treated as we are, including the GWS groups. If veterans, backed by many dedicated and able advocates, can get railroaded like this, we have no chance.

    Think big, not small. Then take a small break and think bigger.

    Think of this as an opportunity to prevent the likes of the NICE guidelines going global, and our healthcare and financial support being decided by checklists from organizations for which ATOS is currently our best example.

    Yes, a good place to start.
    Delia, Valentijn and Battery Muncher like this.
  6. Nielk

    Nielk

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    I think that what we need is a major demonstration in front oh HHS building in Washington DC.
    WillowJ, taniaaust1, Marty and 2 others like this.
  7. alex3619

    alex3619 Senior Member

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    ... and not an ME demonstration I would suggest. A broad coalition of related interests would work better.
  8. Firestormm

    Firestormm Guest

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    I have never felt keen on joining in with other 'medically unexplained conditions' as I feel it dilutes any argument that ME is different. But don't let me distract you chaps from this thread. I just think that it would reinforce the notion that there is very little to choose between us - so why not make any guideline 'wishy-washy' as essentially all the treatments are the same anyway. I think any action should be from those with ME/CFS and along the lines of 'clinicians know best' - assuming that this is what you believe of course.
    barbc56 and Esther12 like this.
  9. Nielk

    Nielk

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    I'm thinking of a demonstration of ME/CFS patients in front of the HHS building on the day of the next CFSAC meeting.
    I think that one of the reasons that HHS decided to do a webinar meeting this November is because they know that we are outraged and they wanted to avoid a physical demonstration in the building. We can't be inside the building, but we could demonstrate outside.
  10. Nielk

    Nielk

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    In the article Talking with CFSAC, Ken Friedman stated:


  11. Esther12

    Esther12 Senior Member

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    Instinctively I'd agree. Also though, I have seen talk on american politics sites that sounds very similar to the talk used to promote the ATOS/biopsychsocial/DWP reforms which have caused so much harm in the UK. This context could be relevant to the IOM contract, and could also indicate that this is part of a wider push to reclassify what disability/illness is, which should attract concern from a wider range of people.

    I suck as any sort of activist, as while I am deeply concerned about the IOM contract, I'm also deeply unsure how to proceed in response.
    Delia, leela, alex3619 and 1 other person like this.
  12. Firestormm

    Firestormm Guest

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    I was only now saying the exact same thing to Gabby again in relation to myself! :)
    Esther12 likes this.
  13. alex3619

    alex3619 Senior Member

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    If you are arguing research, then yes. If you are arguing opposing government interference in research and medical treatment, does it matter if its ME, MS, GWS, fibro etc.? Some principles are universal. Governments trying to legislate diseases away should have gone out with King Canute. He tried very hard to make the point that no law can alter reality. The whole issue with DWP and ATOS in the UK comes under the same heading. Does it really matter if they have ME or something else? Wrong is wrong.
  14. Valentijn

    Valentijn Activity Level: 3

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    I don't think that teaming up with other advocacy groups for illnesses with similar government-induced problems would necessarily give that message. The idea isn't to say "we're all the same", the idea is to say "HHS is screwing over all of our groups, and we all demand appropriate action for our separate illnesses."

    So really it wouldn't be a directly illness-related demonstration at all. It would be a protest of a government agency.
  15. Esther12

    Esther12 Senior Member

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    I try to learn from the Iraq war, and my own deluded sense of superiority over those marching against military action. With CFS, there does seem to be a history of trusting authority going wrong. I think that it is easy to assume one needs really clear and compelling evidence to oppose authority, when often, the views of those in positions of authority are utterly lacking in good supporting evidence of their own - they're just better at pretending otherwise. (I keep adding more, and then deleting stuff to this post. I'm not really sure what I think yet.)
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree, Eco. Unity and coalitions are imperative in politics which is what we need to master and act on if we are ever going to get the help we need. We are starting to go that way with the coalition4mecfs, the jointly signed letters and Hillary Johnson and Judy Mikovits connecting with Autism and Lyme patients. All this is great, the faster we unite and louder we protest and influence congress the sooner we will get relief. (My only disagreement with you Eco, would be I think it is always worthwhile to engage congress, and that ultimately that is the route that will finally get us help).
    Delia likes this.
  17. Esther12

    Esther12 Senior Member

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    I think that there does need to be a caution about linking up the most instinctively despised patients in medicine! An approach like this would need to really emphasise the importance of looking for the different causes of different people's health problems, rather than lumping people together to be 'managed/manipulated'.

    The XMRV linking of CFS and autism was just nonsense, and we don't want to inappropriately lump people together in order to campaign against inappropriately lumping people together.
  18. Ecoclimber

    Ecoclimber Senior Member

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    Think Critical Mass! We need to get this topic trending on Twitter, Google, Reddit, Facebook, and the Blogosphere

    We just can't talk about it what needs to be done. It's too late for that. Action must be taken! This train is speeding down the tracks.

    Someone must step up to the plate and take ownership of this project!

    We say people are too sick to protest. Why not enlist the support of members of the HIV community Act UP demonstrating on our behalf. How more poignant can that be? They of anyone should realize our plight.

    Contact our advocates
    Llewellyn King White House Chronicles
    Mindy Kitei CFS Central
    Bob Miller
    Hillary Johnson Osler's Web https://twitter.com/oslersweb
    ME/CFS directors in Australia
    Me/CFS directors of the ME-UK organization
    Dr. Bateman at http://www.offerutah.org/ https://www.facebook.com/OFFERUtah
    Support@OFFERUtah.org; Paul Shepherd pshepherd955@gmail.com
    Dr. Speedy at http://niceguidelines.blogspot.com/
    http://cfspatientadvocate.blogspot.com
    Thoughts about ME
    AMY DOCKSER MARCUS of the WSJ who has reported on ME/CFS amy.marcus@wsj.com.

    Patients need to make a commitment to sign up by offering to contact patient advocates from other patient communities and post in a thread within their forums. It wouldn't take more than 15 minutes.

    Talk to the patient advocates of the Gulf War veterans and find out from them what they would do differently given the outcome from the IOM. They could give us invaluable advice and insight but someone needs to sign up for it and take ownership!

    Why not post on this thread by letting people know, "I'll take the Fibromyalgia group or I'll contact the Gulf War veterans group." The names of the patient advocates are in the articles on various threads here or just Google it.

    Sign up to solicit the help of these groups to confront the tactics of the DHSS and the CDC to redefine this illness.

    Waiting for the CFSAC meeting will be too late. Over the last 10 years after years of testimony after testimony... ad nauseum.... nothing has been generated from the Feds to change the perception of this illness other than awarding more NIH grants for pscyho-somatic research. Top Tier scientists from leading research labs have applied for NIH grants into researching the biological and organic cause for this illness and have been turned down. This is a fact!!

    This decision is coming from the Executive Branch of Government. The Gulf War veteran group had a Congressional mandated scientific Research Advisory Committee. The Executive Branch ordered the VA to bypass this committee, ignore and bury the scientific information and filled the committee with people who would validate the decision made by the VA and the Executive Branch to turn the illness into a psycho-somatic disorder.

    To date, the VA has killed off more veterans with their ineffective psychological modalities than the Taliban did in 10 years of combat. There are between 18-22 veteran suicides per day. If this was a result from a veterans taken a drug, the FDA would pull it from the market. But ineffective psycho 'therapeutic' are seldom pulled...i.e. PACE

    A note from a soldier
    "My body has become nothing but a cage, a source of pain and constant problems. The illness I have has caused me pain that not even the strongest medicines could dull, and there is no cure," Somers wrote in his note.

    "All day, every day a screaming agony in every nerve ending in my body. It is nothing short of torture. My mind is a wasteland, filled with visions of incredible horror, unceasing depression, and crippling anxiety."

    Soldier's suicide note goes viral; family demands better for veterans

    Lets suspend focusing on our own remedies and chatting for the time being and focusing on getting the word out. Critical Mass.

    Eco



    This is an organization that someone in Australia can contact to help our cause. We need to support each other during these times of fiscal restraint.

    NEWS: Her dying wish was for Lyme recognition in Australia. RIP, Theda



    NEWS: Her dying wish was for Lyme recognition in Australia. RIP, Theda - See more at: http://lymedisease.org/news/lyme_di...australia-rip-theda.html#sthash.vRKBXbqC.dpuf
  19. Iquitos

    Iquitos Senior Member

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    "We have been contacted by members of congress for information on how they should respond to their constituents. Yesterday we were contacted by a journalist reporting for the pharmaceutical industry for our reaction to the letter to the Secretary calling for the IOM contract to be abandoned."

    This is a quote from the letter CAA/Suzanne Vernon wrote Dr. Bateman in her efforts to get Bateman to come out against the letter our 35 experts wrote to HHS and which Bateman had signed.

    Then she goes on to say how they, CAA, represent patients' voices.

    Therefore, when we write anyone or make up any petition, or sign one, we need to spell it out that CAA DOES NOT REPRESENT PATIENTS, and that, in fact, their maneuvers are contrary to patients' interests.
    Delia, taniaaust1 and Valentijn like this.
  20. Ecoclimber

    Ecoclimber Senior Member

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    I've been say this in all my correspondence. With 17 million patients worldwide and 1-4 million in the U.S., they are represent a very small number but then they have to put their spin on it. They convinced the Feds. This is what happens when complacency and apathy sets is embedded in the patient community. Let the other guy do it. There are over 200 people on here at any given time. You could divide that many people into 10 groups to contact the various organizations.

    The people who hang out in chat. Why not ask others on there will you help me with this group. Pick a group. Any group and go for it!

    Wessely stated that GWS was psycho-somatic for the UK veterans. Strange how a few years later, after a contract with the IOM who previously never defined illness criteria, the same thing is occurring with the U.S. veterans.

    Wessely stated that ME in the UK was psycho-somatic. Now a year later after the VA contract, an IOM contract is awarded to define illness criteria for ME/CFS over the objection of 35 34 ME/CFS researchers/clinicians. Dr. Unger refuses to add an extra day for the PEM tests, hmmm. The fix is in.

    Future funding, award and grants are given to those who co-operate and is cut off for those who don't. This all comes out of the Excutive Branch of Government.

    Is everyone willing to roll over and let this happen? Tom Hennessy pointed the way. I have pointed the way. I cannot at this time take this project on. I've been working behind the scenes on the back channels. There is serious concern among the top researchers on the CFI project concerning this issue.
    Delia likes this.

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