Overview
Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of demands to the US government relating to research and medical treatment for ME. After the protest, we solicited broader community feedback via an online survey, which was completed by 191 respondents.
The survey demonstrated overwhelming support for the demands, with the four high level demands each receiving at least 90% support. The supporting rationale and details each received more than 84% support. The detailed survey results are available here. After the September 27th protest, we plan to review suggestions to refine the demands to make them even stronger.
#MillionsMissing ME/CFS Protest Demands
On September 27, 2016, at the #MillionsMissing demonstrations, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services and its agencies — especially the NIH and CDC — to implement the following list of demands.
Our goal is to give the 1 to 2.5 million disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing — missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. Millions of dollars are also missing from ME/CFS research, and millions of medical providers are missing out on proper clinical training to diagnose and help patients manage this devastating illness.
For ME/CFS patients and their families, we demand:
1) Increased Funding and Program Investments
250 million in funding and program investments, commensurate with the disease burden
2) Clinical Trials
Clinical trials to secure medical treatments for ME/CFS
3) Accurate Medical Education to Improve Quality of Clinical Care
Improve access to and quality of clinical care through appropriate medical education
4) A Serious and Urgently Executed Commitment
HHS leadership, oversight and a serious commitment to urgently address ME/CFS
These are identical to the demands assessed in the survey, with the exception of two changes:
- “to improve access to and quality of clinical care” has been added to the Medical Education bullet to reflect the broader intent of that section of the demands.
- “Urgently Executed” has been added to the Serious Commitment bullet to reflect the broader intent of that section of the demands.
Reviewing the demands after September 27th
Despite the very high level of support for the current draft, we view the demands as a living and evolving document. We hope to consider and incorporate some of the suggestions we received in the qualitative feedback sections. Examples of suggestions to refine the rationale and details include:
- Increase the funding for each year of the RFAs and clarify the basis and intended use of the $250M requested for NIH funding
- Call for the use of the Canadian Consensus Criteria for ME for all research, and potentially in clinical care, too. (Most called for CCC but a few called for the ME-ICC)
- Incorporate more specific demands about issues regarding access to and quality of clinical care, including issues around disability and insurance
- Reconsider the demand to house the disease in the neurological institute (NINDS), as that might not be the most appropriate institute, and support from multiple institutes will be needed
- Standardize the name used throughout the document. There were mixed views on ME versus ME/CFS that will need further discussion
- Edit the document for readability and grammar
Given our the very high support for the demands as-is, we have decided to defer the discussion to allow us to focus on planning a successful protest.
View the full USA Protest Demands here.
7 thoughts on “US: #MillionsMissing Protest Demands”
On August 12th, 2016, I sent the following letter to MEAction regarding their MillionsMissing demands:
“MEadvocacy sent you a letter before the May 25 protest letting you know that they and their supporters would not endorse demands from the ME community that do not include as a priority the name myalgic encephalomyelitis in conjunction with the ME criteria (CCC and or ICC) – not the CDC or IOM criteria.
Even though I am an independent advocate now, I advocate for the same demands as MEadvocacy.org and their supporters.
I do not support demands to HHS that do not start off with demanding recognition of the real neuroimmune disease ME. Without this recognition, we are causing harm to the ME patient community.
In addition, to use the name ME without advocating for criteria created by our ME experts is deceitful. The IOM panel themselves distinguished IOM/SEID from ME and recommended separate coding.
Sincerely,
Gabby Klein
ME advocate – relatingtome.net.”
MEAction did not address MEadvocacy’s concerns about the demands in May, nor have they addressed my concerns in my letter to them dated August 12th, 2016.
Their current demands have not changed the wording in section #3 about Education. They still demand the CDC amend their website and educational information to comply with 2014 IACFSME Primer and with the IOM report supplemented by CFSAC recommendations.
MEadvocacy has shown in their blog – Analysis of CFSAC August 2015 Recommendations for the IOM Criteria that the IOM criteria – http://www.meadvocacy.org/analysis_of_cfsac_august_2015_recommendations_for_the_iom_criteria – even if the CFSAC recommendations are incorporated will result in an inferior criteria to the CCC and the ICC.
The majority of ME patients prefer the CCC and ICC criteria over the IOM as outlined by Dr. Leonard Jason’s recently published paper: ‘Patient Perceptions Regarding Possible Changes to the Name and Criteria for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis’ – https://www.jscimedcentral.com/FamilyMedicine/familymedicine-3-1090.pdf. Over a thousand global patients filled out questionnaires about the name and criteria for the disease. The results revealed that 32-35% of respondents approved of the IOM criteria, 58-64% prefered the CCC, and 55 to 58% prefered the ICC.
In addition, myalgic encephalomyelitis was the preferred name chosen by a majority of patients 65-68%. This should be reflected in the demands to HHS.
I therefore, cannot endorse MEAction’s demands and would ask MEAction to make it publicly very clear that these demands do not reflect the demands of the majority of ME patients.
The demands patently reflect the wishes of the majority of ME patients and caregivers who engage with #MEAction. We surveyed the community and an overwhelming majority of respondents supported the demands as is. Moreover, the question of definition and name are exactly what we are going to examine after the protest. We have never purported to represent ALL patients – only the patients who choose to join and participate in this movement. Anyone who doesn’t agree is free to do exactly what you are doing – exercising your right to voice your disagreement and voting with your feet by not joining in our actions.
Regarding the name, our own surveys showed even stronger results than Jason’s: http://meaction.net/2016/08/07/meaction-rfi-poll-report-1-of-3/ On the basis of the survey, the platform has adopted the name ME in official communications. The decision was controversial. Many patients support ME if there was an official (medical, scientific, or governmental) change but are ambivalent about the best strategy for messaging to the outside world under the current status quo. This is why we want to be careful where the demands are concerned and not assume that the results of our survey or Lenny Jason’s survey can be readily transferred to the demands. The demands require their own, separate process.
90% of respondents support the demands as is. This is the largest mobilization of patients in history. I strongly disagree that the demands and the #MillionsMissing movement do not represent the majority of ME patients. But no organization or movement will ever represent everyone and we have never once claimed to.
“The organization, MEadvocacy , their supporters and independent advocates who advocate for the disease Myalgic Encephalomyelitis (ME) and for the criteria CCC and ICC represent a significant percentage of the ME community. According to Jason’s latest study (as shown below), the majority of the community prefers the name Myalgic Encephalomyelitis (ME) over CFS, ME/CFS or SEID and selects the CCC and ICC criteria over the IOM criteria.
Therefore, MEadvocacy and independent advocates such as myself, have repeatedly communicated the name and criteria preferences to MEAction to include them in the protest demands but have been cut out of the process time and time again. Additionally, MEadvocacy and their supporters were excluded when MEAction met with high-level staffers at HHS recently – again shutting out a significant voice in the ME community.”
Read rest of blog here –
https://relatingtome.net/2016/09/25/my-comment-to-meactions-millionsmissing-protest-demands/
Most likely my comment will not be post it, do to the nature of my expression , but I’ll say it any way!! I believe we already have enough with the fact that we been played, ignored , used by our goverments and their institutions, since the very biggining it’s more than clear undisputable, that ME or CFS however we want to call it ITS A REAL CRONIC ILLBESS!!! And they know it, we need to be together in this battle , they have the power , they control the media, they have the money and if ontop we Gona be caught up in this internal fights they will take advantage to one more time put us back in the hole, they have powerfull minds that are paid just to think and figure out how to deceive us, how to mainteint the world from seen us as a real cronic disease , how to prevent the world to panic of contracting the pathogen that cause the immune suppression and disfuntion that is the cause of our illness, the kind of panic that the public have for other cronic illness like HIV etc , there is no doubt that this is a NEUROIMMUNE DISEASE!!! IF WE WANT THE NIH, THE GOVERMENT TO DO REALLY STEP US, WE NEED TO GO STRONG UNITED, WE HAVE TO USE STRONG WORDS THAT THE GOVERMENT IS HIDDING SOMETHING, THAT THE GOVERMENT IS BLOCKING ANY FINDINGS IN ME BECOUSE THEY DONT WANT TO FIND THE UNDERLAYING CAUSE.
Hello Mark,
I’ve been “missing” almost 9 years now. On seeing your post I have to comment, as I have suspicions myself. Due to the nature of this disease and the lengths that governments around the globe seem to take in order to keep it hidden- from the media, from the public, and even doctors, who are actually taught in some med schools to treat ME & CFS patients with disdain, one does not have to reach far to know that something just isn’t right! So, if it’s any consolation, you’re not alone!
Kudos to your creativity and your energetic and inspiring mobilization for your plan to trouble the sleep of NIH and other government entities when it comes to the plight of me/cfs.
I joined yesterday but ive been a pain care advocate since 2009. Currently I am working on the rallyagainstpain and we hope we can work together on some common goals.
It is tragic that government and the health care industry has not been believers in coproduction or cogovernance. They have missed the opportunity to harness the great energy and thoughts of so many whove suffered chronic illness. Having said that they could expand PCORI or change the advisory committee act at DHHS, DOD, VA, etc to be more inclusive of nonprofessionalized Americans. With a new Administration around the corner we have time to call for a new vision and a more inclusive plan that will not relegate people with illness to moral and civil vagabondage. As Dr Biro wrote- as long as the conversation lasts people who suffer are not alone.
Hi Dave,
Thank you for your comment. It would be great to work with rallyagainstpain towards our common goals. Let’s keep in touch, especially around our next global Day of Action.
Take care,
Adriane
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