1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

International experts speak out against the IOM contract to determine clinical diagnostic criteria

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 24, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    644
    Likes:
    922
    View the Post on the Blog

    View the Post on the Blog
  2. beaker

    beaker CFS/ME 1986

    Messages:
    357
    Likes:
    484
    USA
    yay ! I await Mary's instructions.
    Let's hope they are heard. Let's make sure they are heard.
    ed:
    Make that a "we" instead of "they" !
    aimossy and Nielk like this.
  3. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    415
    Likes:
    342
    Illinois, USA
    Thank you Mary.


    I've been thinking of the following for quite a while.


    An advisory committee for AIDS at least discussed resigning en masse to protest poor response of the US government. Sorry for the dim memory but I think it was 1991 during a relatively short relapse for me while living on Capitol Hill. I haven't been able to find information on it online. It seems like the name of the woman chairing the committee was something like Dr. Osborn.

    Perhaps the CFSAC should consider doing that now after three decades of government screwups and 20+ years of being ignored.

    Back then on Capitol Hill I endeavored to be the model of diplomacy in representing the patient community. After seeing what has transpired since then I think we need less diplomacy sometimes and more healthy activists all the time.


    Tally, Nielk and beaker like this.
  4. Nielk

    Nielk

    Messages:
    4,827
    Likes:
    3,765
    Queens, NY
    Thank you Mary for this very important article!
    A special shout out to Russ for working so hard to rush this through:)

    This is huge news.

    Since the beginning of this proposed action on August 29th, I have been thinking what are our clinicians thinking about this? Where do they stand? Do they want this action to go through?

    The whole world can clearly see their answer. I am so impressed that they have taken time out of their busy lives and worked on this in the background in unity and presented it to the secretary of health.

    I have been feeling very dejected about the fact that HHS seemed to follow their agenda no matter what. I know that many of you were excited about HHS' e-mail of yesterday where they state that they have heard us and we will have a voice in the process. Are we going to have the same voice as we have had at CFSAC for the past ten years? We have repeatedly begged them to adopt and recognize the CCC and work from there for the past ten years and what was their answer? "It is too complicated for physicians to follow". I think that the IOM which by the way never in it's experience were charged with creating diagnostic criteria for disease (except currently for GWI), will just give HHS a larger platform to work their agenda.

    I was telling a friend yesterday that we really have no leverage when it comes to impressing HHS. All we can do is send e-mails to them and/or congress. Why should they listen? Our leverage has just come in the form of this letter from our physicians and researchers! No one else can know this disease better that the signed 35.
    peggy-sue, SOC, aimossy and 2 others like this.
  5. Denise

    Denise Senior Member

    Messages:
    124
    Likes:
    154
    Thanks to Mary for the review, thanks to PR for rushing this news to us, thanks to the signers!
    Looking forward to the next steps for us to take!
    Nielk likes this.
  6. snowathlete

    snowathlete

    Messages:
    1,961
    Likes:
    1,843
    UK
    Very pleased to see this, I think it is the correct approach, so well done to them and others behind the scenes who helped organize it. Hopefully we will continue to see more of the same going forward in other important matters.
    Nielk and Roy S like this.
  7. LaurelW

    LaurelW Senior Member

    Messages:
    552
    Likes:
    89
    Utah
    I was very pleased to see the list of signers--it includes every doctor and researcher I can think of that are in the field--quite a long list. If the government doesn't listen to this, they're fools and obstructionists.
  8. concepcion

    concepcion

    Messages:
    32
    Likes:
    27
    Fantastic! It is such a relief to see the ME/CFS medical experts taking the lead and being so supportive of their patients.
    beaker and rosie26 like this.
  9. Sasha

    Sasha Fine, thank you

    Messages:
    7,008
    Likes:
    4,582
    UK
    I agree - it's great that our clinicians and researchers have got together to do this. I hope they might become more involved in advocacy as an expert group in future. We desperately need their help and they are uniquely positioned.
  10. cruzgirl

    cruzgirl

    Messages:
    33
    Likes:
    5
    wow, great start to my day seeing this letter from all of our wonderful researchers and doctors. I can't wait to see what happens next. Sign me up with any follow through letters we may need to sign and send. Lets put money into research.
    Kati likes this.
  11. Nielk

    Nielk

    Messages:
    4,827
    Likes:
    3,765
    Queens, NY
    I just want to add here that we are in this mess of a crossroads here because HHS did not consult with anyone - not CFSAC, patient advocates nor our clinicians and researchers BEFORE embarking on this "secret" action.
    Liz Willow, SOC, alex3619 and 3 others like this.
  12. medfeb

    medfeb Senior Member

    Messages:
    139
    Likes:
    132
    Neilk said "Are we going to have the same voice as we have had at CFSAC for the past ten years? We have repeatedly begged them to adopt and recognize the CCC and work from there for the past ten years and what was their answer? "It is too complicated for physicians to follow". I think that the IOM which by the way never in it’s experience were charged with creating diagnostic criteria for disease (except currently for GWI), will just give HHS a larger platform to work their agenda."

    My thoughts exactly. My concerns have not changed and now that the experts have spoken, why would HHS pursue this initiative.
  13. readyforlife

    readyforlife Senior Member

    Messages:
    136
    Likes:
    135
    So am I reading this correctly?? The IOM contract is still going through but they have to "use a process with stakeholder input, including practicing clinicians and patients" And it's going to take them 18 months to do this? I was hoping that in the next year we would have some huge break through with a medication to help us. And it's going to take them 18 months just to come up with a Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

    The bright side I guess is that they will collaborate with CFS/ME patients, researchers and clinicians. And have faith they will not do something behind our backs....again.

    As I read the letter from HHS announcing the IOM study a few things pissed me off. I didn't like how pleased they are and how they bring up that the study grew out of the 2012 CFSAC recommendation.



    We are pleased to announce that the Institute of Medicine (IOM) will begin conducting a study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome this month.
    I'm so glad they are pleased with themselves after what they put us through and tried to sneak behind our backs.

    This study grew out of the 2012 CFSAC recommendation to the Secretary to convene a workshop to “reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS.” Because the use of and audience for case definitions for research and clinical care are very different, HHS decided that separate processes were needed to develop them.

    This is their way of saying you asked for it. Yes but we didn't ask for them to lie and go behind our backs and choose a definition with out our community being involved.

    HHS is proud to be making this investment in ME/CFS. We have heard the advocates’ concerns and trust that many have been addressed by the information provided in this email. It is our hope that a widely accepted clinical definition and a clear distinction from case definitions for clinical trials and research will aid in advancing clinical care, drug development, and basic translational research for ME/CFS.

    Now they state how proud they are. Pleased and Proud. Well i'm SICK AND TIRED!!!! I want to trust in them but it's going to be really hard to do.


    To all the hardworking cfs/me advocates/patients within our community that push for change and make sure that nothing slips past us.....THANK YOU.

    Readyforlife
    beaker, Valentijn and Nielk like this.
  14. Sasha

    Sasha Fine, thank you

    Messages:
    7,008
    Likes:
    4,582
    UK
    beaker, SOC and rosie26 like this.
  15. Chris

    Chris Senior Member

    Messages:
    577
    Likes:
    174
    Victoria, BC
    Great news--and all our thanks to the great doctor/researchers who have been doing their best for us for years, and now come up with a strong and united voice that will--we hope--be impossible to ignore. This is real collaboration! Chris
    shannah, rosie26 and Nielk like this.
  16. Sasha

    Sasha Fine, thank you

    Messages:
    7,008
    Likes:
    4,582
    UK
  17. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    However, the CAA has stopped short of rejecting the IOM contract and endorsing the CCC. They had a huge opportunity to stand beside the researchers and clinicians who said "No. We the experts already solved this problem. Spend the money on research instead of on unqualified people groping around in the dark.". And the organization with Research First as their slogan is supporting the IOM process. Just once I'd like to see a bold statement come from the CAA.
    beaker, rosie26, Nielk and 1 other person like this.
  18. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    415
    Likes:
    342
    Illinois, USA
    Otis likes this.
  19. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,291
    Likes:
    4,710
    Cornwall England
    I guess one of the things we have to ask ourselves is how long it is likely to be until any research can lead to an improvement on the CCC. You might say, for example, that if the Rituximab trials work out, then that could blow all existing criteria out of the water; on the other hand if they don't work out - or only do for a minority - and the evidence for ME being an autoimmune disease is not forthcoming: to what degree is the CCC adequate. Is it enough of an improvement on what you have now in the US - the CDC definition - to bring things together and move us forward.

    Personally, I am still at a loss to explain the need for a differing clinical and research criteria when we are where we are i.e. with a disease based solely on exclusion of other more demonstrable conditions and symptomology. NICE in the UK when reviewing all the criteria they did - and at the time (mid 2000's) found that the CCC lacked methodology when compared to other criteria. I don't know what process the IOM and DHSS want to apply to their review: but something needs to happen. Something needs to be agreed as a way forward.
    beaker likes this.
  20. Ecoclimber

    Ecoclimber Senior Member

    Messages:
    563
    Likes:
    800
    Mercer Island Wa
    Why this is important to notify your representative

    The Institue of Medicine, IOM, redefined another illness GWI or GWS which is similar to ME/CFS in 2013. The veterans have a strong lobby in Congress

    Even though the IOM stated that these men and women were exposed to biological and chemical toxins, depleted uranium, particulate matter and infectious agents and the IOM acknowledge them as contributors, and it found it found most compelling the scientific evidence that the prime culprits were neurotoxins — in overused insecticides, experimental anti-nerve gas pre-treatment pills, and sarin plumes from the Air Force’s bombing of an Iraqi weapons plant!

    The committee evaluated all treatments for which there was evidence, including prescription medicines and alternative therapies. On the basis of the voluminous evidence it reviewed, the IOM committee cannot recommend one single therapy to manage the health of veterans with CMI and, further, rejects a one-size-fitsall treatment approach. Instead, the committee endorses individualized care management plans.

    The committee notes that the best available evidence from studies of treatments for CMI and related health conditions demonstrates that veterans who have CMI may benefit from such medications as selective serotonin reuptake inhibitors and serotonin norepinephrine reuptake inhibitors, and from cognitive behavioral therapy, which has been shown to reduce symptoms.

    Other interventions and approaches hold promise for treating CMI but lack robust scientific evidence of their effectiveness. For this reason, the VA should fund and conduct studies of interventions, such as biofeedback, acupuncture, St. John’s wort, aerobic exercise, motivational interviewing, and multimodal therapies.

    So you now know what the outcome will be for ME/CFS if you don't contact your respresentative! Need I say more?

    Eco
    Liz Willow, Bob and Nielk like this.

See more popular forum discussions.

Share This Page