MEadvocacy Opts Out of CDC’s Technical Development Workgroup

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MEadvocacy, along with other patient organizations and advocates have been invited to serve on a Technical Development Workgroup (TDW) for the Center of Disease Control and Prevention (CDC). The role of this group will be to provide input on educational materials to doctors and upgrading the CDC website based on the IOM report.  The advisory group of MEadvocacy deliberated whether we would serve ME patients best by presenting the “ME view” at this working group.  We ultimately decided against taking part in this workgroup based on the fact that a key question we asked Dr. Unger about what information could be brought up at these meetings, was not directly answered.

Furthermore, it has become very clear that the U.S. government health agencies have no regard for their own advisory committee and are not acting in good faith to benefit ME patients.  This fact was verified with the Department of Health and Human Services’ (HHS) empty reply to CFSAC’s recommendations of August 2015. Another year of delays and distraction from any real substantive actions, while we have a deteriorating patient population and aging experienced advocates who have been demanding serious and urgent actions from the government for 30 years. MEadvocacy is committed to supporting the ME patient population and will find alternative solutions to educating medical professionals and the public on the disease myalgic encephalomyelitis and we welcome any suggestions on this topic.

The following is our reply email to the CDC:

Dr. Unger (c/o Ariel Weiss):

MEadvocacy received an invitation to participate on the Technical Development Workgroup (TDW) on December 17th, 2015.  We have been awaiting an answer from Dr. Unger to a critical question that we posed on December 30th, 2015.

The question was: Will there be any allowance for information of symptoms that appear on the CFSAC recommendations, CCC and/or ICC, yet are not listed on the IOM to be heard and taken into consideration?

Despite our numerous follow up emails requesting an answer to our question, Dr. Unger and the CDC failed to fully and directly answer our question. Finally, yesterday, January 21st, 2016 the following reply came from Ariel: We are aware of the CFSAC comments on the IOM and these are being included for discussion.

This reply does not take our full question into consideration.  It is actually using the tactic of deflection.  MEadvocacy’s concern was not solely CFSAC’s recommendations to the IOM.  Our inquiry was specifically about the allowance of citing symptomology from the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC).  

MEadvocacy is a non-profit organization advocating for patients suffering from the neuroimmune disease Myalgic Encephalomyelitis (ME).  We promote the use of ME criteria such as the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC) as well as the original name myalgic encephalomyelitis.

Furthermore, the recent release of HHS’s responses to the CFSAC August 2015 recommendations has revealed the total disregard of input from any stakeholder outside the government agencies.  There has been no effort in implementing any of CFSAC’s recommendations.

Based on the deflection of our key question and the total disregard of the voting members of CFSAC’s input, we have no confidence in the equity of the process and that the voice of MEadvocacy will carry any weight with the CDC.  

We have therefore decided to opt out of the CDC workgroup tasked with updating educational material and website based solely on the IOM.

Sincerely,

Tracey Smith
MEadvocacy.org
Advisory Group Member

 


Showing 14 reactions

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  • commented 2016-02-03 18:04:05 -0500
    Gabby — you go gal. We have to stand up for medical truth or no one will ever be cured. We have to return authority to our professionals, as is done for every other disease. The IOM report is invalidated by the omissions from the bibliography. Whether accidental or willful, these omissions, notably everything before 1988, make the IOM report woefully inadequate. The IOM bibliography follows the Straus cover-up, which is a hopelessly false source for medical decision-making.
  • commented 2016-01-25 16:16:13 -0500
    MEadvocacy appears to be the only advocacy organization that is working from the “outside” against the CDC enforced rules of disseminating the IOM criteria in exclusion of the CCC and ICC.
    In addition, if you look up the history of the Act Up movement. you will see that in the beginning AIDS activists wanted to remain wholly independent from the government. It was only later, when they had the ear and respect from the government that some joined in to work from the inside.

    Their motto was “silence=death”. They were very vocal and at times violent in their protest. This is how they accomplished media and government attention. That’s how they finally achieved the government to take their disease seriously. They did not accomplish this by staying silent and agreeing with the inactivity and neglect by the the governmental health agencies.

    We cannot afford to allow the government to continue burying the true ME disease as they have done for the past 30 years. This is what they are trying to accomplish by forcing the IOM criteria on us. The IOM criteria are another broad government sponsored criteria which is even broader than the Fukuda criteria. Reflections on the Institute of Medicine’s systemic exertion intolerance disease by Leonard A. Jason, Madison Sunnquist, Abigail Brown, Stephanie McManimen, Jacob Furst http://pamw.pl/sites/default/files/inv_9_Jason%20ONLINE.pdf (page 578)
  • commented 2016-01-25 14:52:47 -0500
    The table had changed substancially since Act Up’s campaigning days. Now presence of patient groups at the table is used by beaurocrats to claim they are transparent, inclusive and collaborative while the tabel has bern used only to manipulate and buy off the “advocates” at the table. Three decades of ME history has proven this. It is time for patient advocates to demand a new table that woeks for us. It can’t be done sitting at the same old corrupt table.
  • commented 2016-01-24 13:24:43 -0500
    Gabby,

    ACT UP always kept someone at the table for dialogue.
  • commented 2016-01-24 13:18:20 -0500
    Mark – The analogy of congress and senate does not apply here. Each congressperson and senator has equal power with their individual votes. CDC is holding all the power of decision making. The fact that they invite input from CFSAC or stakeholders on their many workgroups is just an illusion of power. As we have seen in the past 30 years, we have had no power in their decision making.

    If you have followed ur actions in the past year and a half, you would see how much we have achieved in raising awareness of the true neuro-immune disease ME, especially the severe ME patients.

    We have uniquely pointed out the corruption of the politics of the US governmental agencies. The work of advocacy is not to blindly follow what the government says, regardless of how harmful it is to patients. The job of a good advocate is to stand up against the corruption, raise awareness about it and put pressure on these agencies to affect change.

    AIDS advocacy did not achieve change by making nice to the government, With their Act Up revolution, they eventually forced the government to make the changes needed.

    Yes, we stepped up to the arena, being sick and all and we will continue to push for change and for the recognition of the distinct serious neuroimmune disease, ME. We are advocating for proper funding and research for ME cohorts which will eventually result in medical biomarkers and effective treatments.

    If you are looking for n advocacy organization who just follows and goes along with government, we are not a right fit.
  • commented 2016-01-23 13:32:12 -0500
    I was thinking the same as OP’s, completely opting out helps no one. The baby just went out with the bath water.

    Best to be a part and your voice heard and documented. Otherwise you are just preaching to the choir. That’s got to stop.

    Congressman and Senators don’t opt out of the entire process when they believe a vote will not go their way, they vote for or against and go on record as to why. The Supreme court gives clear written documentation as to why they judged a case the way they did even though a judgement did not go the way they believe it should. They are still a part of the process because that is what they signed on to do.

    I can understand not wanting to be a part of an advocacy organization or politics in general but you stepped into the arena of politics when you signed on to be an advocacy organization. I think it is time you dissolve and let financial support go to those who are able to navigate the politics.
  • commented 2016-01-23 13:20:06 -0500
    I am very pleased that ME Advocacy has shown both the intellect and moral integrity to take this stand. It is so much easier for a nonprofit to play ball with them recieving trinkets and money while forgetting the mission and responsibility to ME patients.
  • commented 2016-01-23 11:03:21 -0500
    On behalf of MEadvocacy, I want to let everyone know that we do appreciate the community voicing their concern with our decision and I hope the comment that I just posted helps clarify our viewpoint.
  • commented 2016-01-23 10:59:50 -0500
    For those outside the U.S., ME advocates have been participating in a U.S. Health and Human Services (HHS) government appointed committee called Chronic Fatigue Syndrome Advisory Committee (CFSAC) for many years. Committee members have voiced the need for quality doctor education since day one. There has been A Clinical Case Definition and Guidelines for Medical Practitioners since 2005 (Canadian Consensus Criteria) which has been recommended to the CDC for use and they have repeatedly refused to use these guidelines. See MEadvocacy.org resource page.

    We were hoping that there were signs of change; that the government decided to finally respond to the ME community’s pleas. But it takes more than words; it takes action. And the actions that the government has continued to take is abysmal especially in regards to the CFSAC recommendations. This is due to an inherent bias within the HHS structure and its entities.

    For over 30 years advocates’ and patients’ have made valiant efforts to work with the government to implement urgent changes without substantial result. Efforts that have deteriorated their health, and have sacrificed their energy that they could have spent with family and friends. The recent NIH and CDC’s CFSAC responses have shown that it’s still “business as usual”; roadblocks and excuses prevail.

    If the government has stakeholders’ participation, they have claimed and will continue to claim that we are part of the decision making – whether they listen to us or not. Participating in this sham of a process will only enable CDC to stall longer. We have lost too many patients over the years to death directly resulting from ME and from the negligence of the medical system that is following the lead of the government agencies; from children to adults who are losing too many precious months, years, decades of livelihood that has been stripped away, forever lost.

    This delay will only prolong suffering and increase the body count, which is exactly why MEadvocacy will not participate. It’s not so much about principle, as it is about not validating action that is harmful to the community and we will find ways that are more effective at forcing change and to especially protect the severe patients.

    Changing the course of action from trying to work with the government to working around or outside of the government is not giving up. We cannot keep repeating the same actions of the past; it is a definition of insanity. “The definition of insanity is doing the same thing over and over and expecting different results.”

    MEadvocacy is dedicated to finding new directions to either work around or change the institutional bias of the HHS, NIH and CDC. We have been very vocal and active in communicating the needs of the ME patient population with emphasis on inclusion of the severe patients that have been categorically left out.

    For more information about the historical U.S. HHS’s institutional bias, please see links on the reference page of our website (MEadvocacy.org) which includes a great document by Mary Dimmock Thirty Years of Disdain – How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis.
  • commented 2016-01-23 09:54:45 -0500
    I am very disappointed with your decision to opt out of being an advocate for all of us primarily because your question was not answered to your satisfaction. Perhaps you could have made a a game changing difference with your input on this committee. We will never know. Very sad. I feel MEadvocacy has failed me.
  • commented 2016-01-23 05:44:45 -0500
    It is not at all clear to me, how NOT participating in the Technical Development Workshop (TDW), on ME/CFS/SEID, will help pwME.
    The IOM and its, reports are extremely well regarded, by medical professionals and the wider community. It is not helpful, to claim to “know better”, than a panel help in such high regard, worldwide. The CDC in asking MEAdvocacy to participate in the TDW, recognises the positive input advocates can have in fine tuning technical material.
    I have used the IOM report, to convince care, health and insurance agencies, that ME/CFS/SEID, is a real and serious disease, in order to help a person with profound ME. It has been a game changer for me. I can attest that advocating for a profoundly ill person post the IOM report is infinitely easier than before this report was published.
    I hope that MEadvocacy, will reconsider its decision, to refuse to be involved, and will participate in the TDW.
  • commented 2016-01-23 03:04:28 -0500
    Governmrnt Health agencies that blatantly refuse to partner in full with M.E. Advocacy clearly want their own agenda propogated. It is not surprising given the ongoing climate of misinformation and fragmentation these agencies have circulated, thereby allowing this disease to become a pandemic over the 30 years of denial and neglect. It behooves our community to expose this disregard and make it known that we will not become embroiled in yet another layer of false interest.
  • commented 2016-01-23 02:36:07 -0500
    Surely fighting for change is more important than morals. We know from ME history that people entering groups of concern can cause those people to be tarred with the same brush by some. However, that tarring stems from silence. You make your stance on ME clear and so long as your stance remains clear, you will not lose any respect from those you support.
    You do not have to compromise. Surely decisions will be made by a majority consensus. You can not force the outcomes but you can take reality to the table; a reality that others may not have considered.
    You have to be in it to help make change.
    You clearly have the ability to help make change and this is an organization who will have major influence over people’s lives.
    Please reconsider and take part if at all possible.
  • commented 2016-01-23 01:24:17 -0500
    Very disappointing that the advocacy and patient groups, aren’t prepared to advocate, for us, raise our issues with and work with the CDC.
    We need advocates, who can influence the decision makers, within the system,

    It seems as if we finally got invited to the party and the advocacy groups are whinging, because tjey want to choose the colour of the table cloth.
    Our advocates need to look at the big picture. There is an urgent need, for money, for bio-medical research, centres of excellence.,…the name and symptom classification, will be redundant, once the pathophysiology of ME/CFS/SEID – is known.