1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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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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    Yes, I'll PM You.
  2. Hermes

    Hermes

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    5 Reports by IOM mentioning ME/CFS and stating their position on ME/CFS from 2000 – 2013

    I have only included a brief synopsis of each report and links to relevant pages from the report


    Gulf War and Health (2013)

    Reeves paper cited and contains several important flaws, including a prevalence figure of 2.54%. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Page 22 states that ME/CFS is a somatoform disorder, which is a vague psychiatric illness. Page 97 mentions somatic symptoms. The “primary research” source not included. Primary research should have been included and should have contained findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. The psychiatric based NICE guidelines were included in the definition along with the outdated Fukuda definition which is vague and imprecise, but the Canadian Criteria (2003) and Nightingale Critera (2007) and International Consensus Criteria (2011) were ignored and excluded. Psychiatric treatments such as CBT, GET and psychiatric drugs were recommended for ME/CFS. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored.

    http://books.nap.edu/openbook.php?record_id=13539&page=22

    http://books.nap.edu/openbook.php?record_id=13539&page=97

    http://books.nap.edu/openbook.php?record_id=13539&page=98

    http://books.nap.edu/openbook.php?record_id=13539&page=99

    http://books.nap.edu/openbook.php?record_id=13539&page=100

    http://www.nap.edu/openbook.php?record_id=13539&page=120


    Gulf War and Health (2010)

    Wessely cited and Straus cited. Wessely’s 1998 paper contains several important errors.Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=12835&page=210

    http://www.nap.edu/openbook.php?record_id=12835&page=211

    http://www.nap.edu/openbook.php?record_id=12835&page=212

    http://www.nap.edu/openbook.php?record_id=12835&page=213

    http://www.nap.edu/openbook.php?record_id=12835&page=214


    Gulf War and Health (2008)

    Wessely cited and Straus cited. Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Telephone and mail shots used as “primary research” source. The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=11922&page=174

    http://www.nap.edu/openbook.php?record_id=11922&page=175

    http://www.nap.edu/openbook.php?record_id=11922&page=176

    http://www.nap.edu/openbook.php?record_id=11922&page=177

    http://www.nap.edu/openbook.php?record_id=11922&page=178


    Gulf War and Health (2006)

    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.

    http://www.nap.edu/openbook.php?record_id=11729&page=161

    http://www.nap.edu/openbook.php?record_id=11729&page=1612

    http://www.nap.edu/openbook.php?record_id=11729&page=163

    http://www.nap.edu/openbook.php?record_id=11729&page=164

    http://www.nap.edu/openbook.php?record_id=11729&page=165


    Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)

    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. ME/CFS assumed to be a somatoform disorder.

    http://www.nap.edu/openbook.php?record_id=9953&page=343

    Quotation from report http://www.nap.edu/openbook.php?record_id=9953&page=343
    “ The recognition of a new disease is far from straightforward (Wegman et al., 1997). The simplest statement is that it is a process (Kety, 1974), often taking years. The purpose of the process is to demonstrate that patients are affected by a unique clinical entity distinct from all other established clinical diagnoses. The individual “steps” for gathering and interpreting evidence are not clear-cut. Evidence from biomedical research plays a prominent, but not necessarily exclusive, role in defining and classifying a new disease. Social factors, including culture and economics, influence the recognition, classification, and definition of a new disease (Rosenberg, 1988; Aronowitz, 1998; Wessely et al., 1998).”

    This is contradicted by the way that ME/CFS and Fibromyalgia has been recognised and classified by some psychiatrists. Recognising and classifying a new disease is very straightforward for some psychiatrists, they just term it a psychiatric illness and in some cases give it a new definition and classification to suit their own purposes. They even create a competing definition of their own in order to take over an illness. And they conveniently ignore all the biological and biomedical evidence which prove its not a psychiatric illness. Several physical illnesses were wrongly classified as psychiatric in the past, but have since been proved to be physical and biological illnesses not psychiatric.

    http://www.nap.edu/openbook.php?record_id=9953&page=350

    http://www.nap.edu/openbook.php?record_id=9953&page=354

    http://www.nap.edu/openbook.php?record_id=9953&page=355
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Not sure where to post this. This came out back on Sept 4th, sorry if this has been posted before.

    I came across this, Vermont CFIDS assn opposed to IOM study.

    http://immunedysfunction.org/action.html

    Didn't see any mention of CCC

    So, now the org count against is I think 4, since I can't tell where PANDORA stands right now. They seem vaguely against it, but not sure.

    Invest in ME
    Vermont CFIDS ASSN
    Nation CFIDS ASSN
    NAME
  4. Hermes

    Hermes

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    November 18th correspondence with IOM

    The IOM's continued failure to admit serious errors and breaches of it's own guidelines in relation to ME/CFS from 2000 - 2013

    Kate Meck IOM (CC to senior IOM members) November 18 2013

    Dear David,
    I appreciate you taking the time to express your concerns. The IOM study staff are committed to supporting this committee to develop evidence-based recommendations on diagnostic criteria for ME/CFS. We recognize the historical frustrations of the physician and patient communities in getting ME/CFS to be appropriately acknowledged and understood, and we want the committee’s work to make progress on these efforts, not hold them back. Let me respond to some of your concerns . . .

    First, the Institute of Medicine does not, as an organization, hold positions on the topics that are addressed by committees or other activities. Previous reports do not constitute a conflict of interest for the organization because IOM reports are authored by independent committees of experts. The IOM’s role is to assemble a committee with appropriate knowledge, with minimized and balanced intellectual biases, and without conflicts of interest. The Committee on Diagnostic Criteria for ME/CFS will be screened for intellectual biases and conflicts of interest. You (and the rest of the public) will have the opportunity to formally comment on the provisional committee slate if you feel that the committee composition is unbalanced with regard to intellectual biases.

    I understand your concerns about the accuracy of the discussion of ME/CFS in the reports listed below. ME/CFS was not the focus of any of those reports, but it is the ONLY topic to be addressed by the Committee on Diagnostic Criteria for ME/CFS. This committee has been specifically tasked to identify the evidence for various diagnostic clinical criteria of ME/CFS using a process with stakeholder input, including practicing clinicians and patients. We will be conducting an extensive literature search to identify published materials for the committee to review and we will hold at least one public meeting to hear directly from the physician and patient communities. You (and the rest of the public) have the opportunity to send or recommend specific articles for the committee to review. The IOM staff will work closely with the committee to ensure that the report accurately reflects the evidence base, including biological/medical research.

    I hope that I have addressed some of your concerns. If you would like to be notified when the provisional committee slate is posted, please sign up for the project listserv. If you would like to send materials for the committee to review, you can send them to mecfs@nas.edu. Please note that all written materials provided to the committee will be placed in a Public Access File. If you have additional questions about IOM processes, you can contact Molly Galvin (cced here).
    Best,
    Kate Meck

    Reply from David Egan ME/CFS patient and advocate and representing ME/CFS organisations

    Dear Kate,

    thanks for your assistance in this matter. You state "committee to develop evidence-based recommendations on diagnostic criteria for ME/CFS." , "he IOM’s role is to assemble a committee with appropriate knowledge, with minimized and balanced intellectual biases, and without conflicts of interest."
    Yet in the 5 GWI reports your "independent" committees of "experts" recommended totally ineffective, inaccurate and harmful diagnostics and treatments for ME/CFS, specifically GWI soldiers with ME/CFS. They showed clear psychiatric bias and ommitted important and vital biological scientific research and medical findings. That's 5 reports by "independent" committees of "experts". Neither independence or expertise were shown by these individuals. This was a key failing of the IOM. The credibility and reputation of the IOM has been affected by this lack of scientific and medical thoroughness.

    How could the IOM make the same mistake 5 times, and elect the same type of "independent" committees of "experts" with the same mistakes and ommissions ? The IOM had ample opportunity to amend these 5 reports in line with scientific and medical accuracy and the protection of the public interest, but did not do so. The IOM owns the process which created these reports, selected the committees and owns the reports themselves, so it is not independent of the reports.

    We are not holding the IOM back, its far better to get the outstanding matters resolved than engage in another rushed job at IOM and have another meaningless and ineffective psychiatric based definition and more years and decades of suffering and premature deaths for ME/CFS patients in the USA and elsewhere. We are dealing with life and death issues here, as exemplified here at this link http://www.ncf-net.org/memorial.htm

    IOM is holding itself back by failing admit to it's past errors, mistakes and ommissions and breaches of its own guidelines. The IOM could decide to step aside until these matters are fully resolved and recommend the current best international practises in diagnostics for ME/CFS ; these being

    Myalgic encephalomyelitis: International Consensus Criteria, 2011.This supercedes 'Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (2003)' listed below.

    ME Primer for Healthcare Professionals: based on Myalgic encephalomyelitis: International Consensus Criteria, 2012

    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols, 2003

    For Medical Doctors - Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Diagnostic and Treatment Protocols, 2003

    Yours Sincerely,

    David Egan.
  5. Wally

    Wally Senior Member

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    [Questioning whether the Canary in the Coal Mine Kickstarter campaign is worth your donation of even a $1.00?

    Check out the success this business had in using Kickstarter for its fundraiser for "99% Invisible". http://on.aol.com/show/funded-517936933/episode/517985156?icid=aolhomepage_rightrail

    Come on be brave, be bold join in this new wave of advocacy and make a small donation to help make our story great. The time is NOW! Go ahead just do it. Be part of the next generation of advocates who are bringing new ideas to how you can have a voice. Fund the ME Documentary "Canary in a Coal Mine.

    Spread the word about this documentary and ask your friends, family and neighbors to ride the wave with you. The "Canary in the Coal Mine" Kickstarter campaign only runs through Friday, November 22nd. Tick, Tock, Tick, Tock. Get yourself into the race without even walking to the mailbox. [​IMG]

    To those who have already made a donation. Give yourself a round of applause. You will be helping to change the course of how this illness is viewed by the outside world.

    [​IMG]

    [This part of the post has been posted at http://forums.phoenixrising.me/inde...l-mine-fundraiser-ends-on-friday-11-22.26563/ . Please see the post regarding the IOM petition set forth below. It is not too late to also take your place on this advocacy stage and voice your concerns with HHS/IOM contract.]
    _____________________________________________________________________________________

    While you are happily clicking away on your computer, also consider signing the petition to voice your concern/disapproval about the HHS/IOM contract. https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/. The contract as currently written has the potential to drive a bus right through our community. Don't let the architects of over 25 years of mistreatment of this illness leave us lying in the gutter waiting to be resuscitated by some knight in shining armor. Don't let this illness be tossed around and marginalized like what appears to be set to happen to veterans suffering from Gulf War Syndrome. Speak up now and stop the potential of ME being returned to the junkpile of "difficult illnesses".

    I believe the HHS/IOM ME Definition Contract in its current state fails to adequately represent and protect patients who continue to suffer from the brunt of this illness. Just a few clicks away from your being part of one of the largest ME patient petitions. Get your message out to the world. The number of individuals who have signed this petition has now reached 3,041 and keeps growing. Our voices are ringing around the globe. Just do it - sign the petition and make history. https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/)

    Wally
    justinreilly likes this.
  6. Ecoclimber

    Ecoclimber Senior Member

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    Patients please post on Huffington Post Canary in a Coal Mine, the more you comment, the more the blog will be reviewed by HP and they might consider further articles on ME/CFS. Huffington Post is #69 on Alexa Top 100 sites so they get alot of exposure so please make a comment about your own personal account so thousands who read her blog will have a better understanding of ME/CFS
    https://tinyurl.com/nur23rk
    justinreilly and beaker like this.
  7. readyforlife

    readyforlife Senior Member

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    Thank you for bring this to my attention. I just left a post, it took me awhile to figure out how to sign in to post. Brain fog.
  8. Ren

    Ren One of nineteen million dark horses.

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    Another ME article and comment opportunity shared by leela (thanks leela!!):

    http://forums.phoenixrising.me/inde...ion-shifts-govt-policy-harming-patients.26620
  9. Ecoclimber

    Ecoclimber Senior Member

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    OK, guys why hasn't this gone viral on the internet???

    INCORRECT GOVERNMENT INFORMATION COULD BE HURTING CHRONIC FATIGUE SYDROME PATIENTS, NEW RESEARCH FINDS! https://tinyurl.com/me6zm8a

    What a golden opportunity to get news article to be picked up in the major press. It slams the Fed Policy on ME/CFS! It slams the CDC policy! It slams CBT/GET! It slams Pace and NICE!

    This is a golden opportunity to get this news story out their to mainline media. Everyone should be posting this article on Facebook, Blogs,Digg, Tumblr, Newsvine, Reddit, Twitter, HP, and everyother social media outlets as well as CNN, MSNBC, Web Health sections everywhere!!!! Don't let this gift get away as it challenges the HHS policy on treatment! Get it out there in public mainstream!

    The mainstream public is not going to come to us by posting in our little blog world or on our forum threads This information has to be posted on the top sites that reach the most people even if you have to just post as a comment on a post. It goes to the top of the search engine heap!!

    Finally, we do not at this time need to create controversy within a controversy by calling ME/CFS non-hiv negative Aids. It will destroy our credibility within the scientific community. We cannot afford to open another issue concerning ME/CFS other then the issues surrounding the IOM Contract. So, Cfsboston don't sabotage our movement with your agenda.

    So again, I urge everyone on this forum to post this article on social sites as indicated above!!

    You can add your comments to the most or create your own on Reddit NEWS topic located here:
    https://tinyurl.com/kkkq5nz

    Thanks,

    Eco
    Last edited: Nov 24, 2013
    beaker likes this.
  10. beaker

    beaker CFS/ME 1986

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    How does one use Reddit ? Thanks
    I emailed it to my rheum. although he likes journal papers. kinda a snob that way ! but i get the reasons for it.
  11. Ecoclimber

    Ecoclimber Senior Member

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    Just go to REDDIT.com click on CREATE NEW ACCOUNT: USERNAME PASSWORD then type in the capcha word and your done! Just click on the reddit link in my previous post and it will take you to the comment section.
  12. Andrew

    Andrew Senior Member

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    I just realized that is a Huffington Post article about exercise making us worse (per Enlander) and I could have liked it on Facebook. Anyone know where the Huffington article is.
  13. Ecoclimber

    Ecoclimber Senior Member

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    Here you go. Some people are having difficulting logging in or creating an account with HP. I don't know the reason for it. You can Log In using your FaceBook, Twitter, AOL and other accounts without having to create another account.

    Moderation and posting on HP. If you have not establish a record with HP on comments, your comments will sit in a queue waiting for moderation more so on controversial topics. There is a shortage on moderators who focus on the hot button topics on HP first so it may be awhile before your comments are posted.

    To date the reponse from my post #169 on going viral with the information coming from the Mt. Sinai ME/CFS conference has been....crickets chirping. I just don't get it? How do you get the general publice behind you if the patient community that will be most effected by this contract is so disinterested...crickets, really?

    https://tinyurl.com/nur23rk
    Last edited: Nov 24, 2013
  14. Andrew

    Andrew Senior Member

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    I think you meant to include a link, but it's not there.
  15. Ren

    Ren One of nineteen million dark horses.

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    Huffpo requires a mobile-phone verified Facebook account, even if you try to log in with email - as I have several times. Its comment field isn't designed for people with limited financial resources and few remaining human contacts. Just saying...
    Delia likes this.
  16. Wally

    Wally Senior Member

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    Reminder and Urgent Request for Action!

    The time is now if you want to be included in the on-line petition objecting to the contract between HHS and the IOM!

    The petition will be going to print on Wednesday (Dec. 4th), so it would be great if the ME/CFS patient community could get the vote out in the next couple of days to encourage other patients, family members and friends to add their voice to this petition. The petition is located at https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/. It only takes a minute or two to sign the petition. You can sign the petition anonymously if you are uncomfortable with providing your name, but be sure to include your country so the world can see how far reaching this illness is felt.

    The petition is scheduled to be delivered in Washington D.C. on Tuesday of next week (Dec. 10th), so go ahead raise your virtual hand/pen and let your voice be heard. The petition already has over 3,000 signatures from 39 different countries, so the drums are beating and the sound is getting louder and louder.

    In addition to the petition arriving in Washington next week, there are two demonstrations planned in San Francisco and Washington D.C.. S.F. demo. will be held on Monday, Dec. 9th and Washington D.C. demo will be held on Tuesday, Dec. 10th. For more information, please see the postings at http://forums.phoenixrising.me/inde...-2013-and-washington-d-c-on-12-10-2013.26686/ and http://www.mecfsforums.com/index.php/topic,18501.new.html#new.

    Even if you are not able to come to one of these demonstrations getting the word out about this media worthy event is a way to show your support. It would also be great if you agree with the petition against the HHS/IOM contract and the ME/CFS experts recommendation to use the Canadian Consensus Critieria (CCC) to sign the petition linked to above. Also you can pitch in and help over the next 48 hours, by asking your family members, friends, acquaintances and anyone else that you can reach to ask for their help and support. Each name and country represented on the petition does make an impact in being heard.

    Wally
    justinreilly, Nielk and Ren like this.
  17. Hermes

    Hermes

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    Critical Mass
    I agree with the comments here. Wally's posting regarding Critical Mass is the best I have read so far. We desperately need a Critical Mass in the USA and all other countries. This must include all patients and their families and their advocates. The protest marches planned for this month are a good start. We also need to set up one focal point or coordinating center for international opposition to the IOM contract. This could include setting up a new Facebook group titled "ME/CFS - All Organisations and Persons opposed to the IOM contract ". This would invite all ME and CFS organisations to join, and enable coordinated US and international plans and events to be put in place to stop the IOM contract. This would enable us to see who is for us and who is against us. It would also identify those who are too lazy, too apathetic, too disinterested, too distracted, too uncaring not to support us.
  18. Ren

    Ren One of nineteen million dark horses.

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    Would it be disrespectful to Canadians / the Canadian flag if the ME community somehow adopted Canada's maple leaf for our ongoing CCC campaign? Might act as a mnemonic device / logo for the task at hand?

    [​IMG]
    Delia likes this.
  19. alex3619

    alex3619 Senior Member

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    I am not Canadian but I do not think it would be disrespectful if we didn't abuse it. We would be saying Canada got it right, Go Canada!
    Delia likes this.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Don't think we really need another Facebook group in addition to US Campaign for ME which is exclusively for opposing the IoM contract
    https://www.facebook.com/groups/USCFORME/
    Delia likes this.

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