17 thoughts on “My Comment to MEAction’s #MillionsMissing Protest Demands”

1. Excellent blog Gabby. Thank you. I am so tired if the games and manipulation from ME Action Network. They are no different than their new friends the CAA (AKA Solve Nothing). They don’t speak for me. Sharing and tweeting this widely.

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   • Yes. I feel the same.

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2. “The majority of the community prefers the name Myalgic Encephalomyelitis (ME) over CFS.”

   No, that’s not quite it.

   What ME patients want is the use of CORRECT TERMINOLOGY. The names ME and CFS are both fine for what they stand for, we don’t need to change either of them!

   But they are TWO SEPARATE PATIENT GROUPS.

   Everyone should stop lumping them together. They are completely unrelated.

   ME is a specific neuro-immune disease in G93.3.
   CFS is R53.82, a category of unexplained fatigue and malaise, explicitly EXCLUDING all of G93.3.

   So let’s stop using ME for CFS, and CFS when it’s ME, let’s also not talk of a ME/CFS community because the CFS community does not want what the ME community wants at all..

   Neither do we prefer the ICC criteria ‘over the IOM criteria’. The IOM criteria are for SEID, not ME. They diagnose SEID just fine. The ICC are the most recent ME criteria, adding detail to Ramsay and Dowsett. Their purpose is to select patients for research into ME and that is how they should be used. They do not replace CFS or SEID criteria in any way.

   ME advocacy and research is important. It helps ME patients.
   CFS advocacy and research is important. It helps CFS patients.
   SEID advocacy and research is important. It helps SEID patients.
   Cancer advocacy and research is important. It helps cancer patients..
   Diabetes advocacy and research is important. It helps diabetes patients.
   Parkinson advocacy and research is important. It helps Parkinson patients.

   And so forth.

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3. You’re boycotting a group who prefers the name myalgic encephalomyelitis and uses hashtags #myalgicE and #pwme to reflect this, and supports the criteria of CCC and ICC and is probably doing the most to bring about change that anyone’s seen in the last ten years? I really don’t understand, and am sad that you’re saying ME campaigners are ‘harming’ the rest of ME people. We’re sick people trying to make a difference. We’re always going to disagree on some things but to boycott a group because you don’t agree with the order of their priorities even if you agree with their overall goal seems a shame to me. I like and respect you, but I’m afraid I’m not with you on this one. I support ME Action and am part of ME Action. I don’t know if that now makes me in the ‘minority’ of ME patients, according to your definition, but there’s some really good stuff being done by the ME action team and I want to celebrate the good rather than nitpick the bad. I appreciate that I probably won’t persuade you, and I wish you all the best with your important advocacy roles within the ME community, but I just wanted to leave a comment here to signal that there are quite a few of us fully behind what the MEAction Network is trying to do.

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   • I appreciate your comment, Tanya.

     I think you misunderstood some of what I have stated. I am not boycotting MEAction. I am not supporting their MillionsMissing demands, as they stand now.

     Their demands include directives to the CDC to amend their educational material to show the IOM criteria plus the CSAC recommendations. As I have posted in my blog post, the IOM criteria – even if it would include the CFSAC recommendations would really fall short of the CCC in critical ways. (See here – http://www.meadvocacy.org/analysis_of_cfsac_august_2015_recommendations_for_the_iom_criteria)

     This distinction might not mean a lot to you, but I feel very strongly that using the right criteria to describe the illness that we are actually talking about is key to our future. (Think of PACE using faulty criteria and what a mess that created)

     MEAction can, of course, choose whatever stand they like, but in the introduction of their demand sheet, they state the following: “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.”

     This statement is deceiving because at least one organization, their followers and some independent advocates do not agree with these demands. Even worse, their input was actually ignored for months.

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     • I didn’t realize, Gabby, that it was the preamble that was the hardest part for you – the demands represent the individuals and organizations who join in #MillionsMissing and there were many US orgs besides #MEAction (OMF, Solve, MassCFIDS) that did in May. I didn’t realize you construed that preamble to mean ALL individuals or orgs. We never intended it that way and obviously nothing will ever achieve the agreement and support of everyone! I think that is implicit but we can try to make it more explicit.

       Would something like this be more clear?

       “On September 27, 2016, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists participating in the #MillionsMissing demonstrations, 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.”

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   • My reply to Gabby’s post here: http://www.meaction.net/2016/09/22/us-millionsmissing-protest-demands/

     The demands patently reflect the wishes of the majority of American 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://www.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. Some 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. (Edit: we heard from patients who said, “I prefer ME but want to use ME/CFS in advocacy messaging – if I had known that was the question I was actually answering in that survey, I would have answered it differently.”) 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. (Edit: Based on our initial survey, the majority of patients supported using ME/CFS or the current mix of language in these demands. This question deserves further interrogation but I imagine a part of that is that whatever our personal name preferences, some patients distinguish between their personal views and strategic views, and while preferring ME think that ME/CFS is a clearer way to communicate to Congress and the media. I personally CAN’T use CFS to refer to my own disease in any context – it feels like a form of self-sabotage or like I am using a slur against myself and it’s visceral. But none of this is about what I personally think. We are constantly trying to build processes that help us follow the community and its wants and needs, but it’s always a challenge to figure out how much to invest in process v. execution when we have such limited resources of time, health and funding.)

     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.

     * * *

     On Twitter, Gabby says the reason that 90% of patients support the demands is that people didn’t have enough time to reply to the survey. Tracey said it’s because people don’t understand the issues. Yes, it was a smaller number of participants than NIH RFI survey (about 190) but a few things: 1) We sent out an email, posted on Facebook and Twitter, and posted on the front page of our website, and posted in all of our groups. We also gave people 11 days to fill it out. Still, we saw am much lower response rate. With the NIH survey, folks only had FOUR days (crazy, I know) but we got thousands of responses. The demand survey was also *much* shorter than the NIH survey and far less technical. 2) On any survey, by the time you reach 100-200, unless the people who come later are very different from those who came earlier, the summary statistic (in this case the percentage of people who supported the demands as is) *doesn’t change.* When we did the NIH survey, by the time we reached 100-200 participants, the averages were identical to what they were when we reached 1000s (but of course larger samples are always better as they allow you to break down responses by things like age, gender, or country). So we could have gotten to 1000 people and still had the same results. In surveys, you don’t need to count every literal person. And 3) the people who filled out the survey were the ones who were most motivated and cared the most. It’s possible that skewed the outcome – maybe those who were most supportive responded in greater numbers. It’s also possible that those who were most upset with the demands responded at higher rates. It’s impossible to know, but regardless, MEAdvocacy members participated in the survey and were also free to share it (or not) with their own membership.

     I wish we could have engaged in an even more robust process re: the demands and when we expressed our intention to do so after the first round of protests, I had hoped to a) constitute #MEAction USA more formally and b) elect a protest committee. The idea was that *they* would help formulate and execute a process for discussing and voting on the demands since that really isn’t the Platform’s job. We couldn’t find enough people to fill five seats, let alone have a proper election. Everyone who had played a major leadership role in May was thoroughly, thoroughly crashed after the last efforts. So while we were receiving concerned emails from MEAdvocacy members (including former members who are now independent advocates but are a part of that original cohort) about why we weren’t doing more, the answer truly was – because everyone is in bed. And those left standing are stretched exceedingly thin. Once we did deploy this survey and saw the overwhelming support for the current draft, we decided to relent to the reality of our lack of capacity. If there had been lower support in the survey, if we had seen that a large proportion of the US community was unhappy, OR if a single person among the hundreds who participate in and actively do the work of making MEAction possible had stepped forward, we would have made this a higher priority. That was just not the case. With such high support, and such low capacity, we turned our attention toward making the protests as successful as possible.

     We do want to continue this discussion after Tuesday but I think we are going to have to rethink who drives this process and how. If we don’t have enough patients who are well enough to run committees and participate in a democratic process that involves a lot of time spent on process (v. action), then we are going to have to rethink what it means to be participatory AND accessible.

     I think it was the right time to do a second day of action because so many in Europe and elsewhere didn’t get a chance to join in last time and are so excited about participating today. And obviously there is a lot of serendipity with the timing of our mobilization and the timing of PACE, Naviaux, etc. So I think it’s going to be a great day. But afterwards, we will need to take a break from this level of campaigning. It is time to invest in sorely needed infrastructure. Even more fundamental, in my mind, than whether the CCC and ME are the language of the demands is the question of *who* decides what the demands are? What is a legitimate, virtual process? How do we as #MEAction USA constitute ourselves? These are not easy questions to answer or processes to support and frankly we have found that when we try to engage others in these questions, most people just want to get out there and do sh**. So the burden is then left to our part-time staff. And again, when the majority of participants aren’t voicing concern….we have to start making hard choices about how we spend our limited energy. Do we spend the energy supporting the hundreds who are volunteering and working alongside us? Or do we spend it responding to criticisms from patients who aren’t participating in MEAction in the first place but represent an outside organization? We will get there eventually but I am not going to make any specific promises as to over what timeline because I can’t know until after the protest and we know what the fallout has been and what capacity we actually have.

     * * *

     As for John Gabor, I am so sorry that is what this all looks like from the outside. From the inside, we are hundreds of your fellow patients, working incredibly hard with very little to try to punch through the silence and invisibility that has plagued us for so long. Given what we are actually doing day in, day out, it’s so hard to understand why from the outside we are perceived as the Evil Empire…that couldn’t be farther from the truth.

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     • Jennifer, the problem here is that your respondents include CFS patients, in fact most likely they are the vast majority. It is not right to base demands for ME on what CFS patients want.

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     • MEadvocacy and I sent emails to MEAction, including all its board members, employees (at the time) and those involved with creating the protest demands expressing our concerns that the demands did not call for the name ME in conjunction with ME criteria (CCC or ICC). MEAction’s reply said that it was too late to change anything for the May protest but those that worked on the demands assured MEadvocacy and myself that their input would be sought and taken into consideration after the protest. However, there was no response from MEAction despite our many attempts to have input.

       In your reply here, you state:

       “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.”

       There were 191 respondents. 90% of 191 is 172. This is hardly evidence of the “largest mobilization of patients in history” who have decided on the protest demands and it certainly does not provide evidence that this comprises the majority of ME patients. (ME?).

       To reiterate my main point – the criteria used for a disease is what defines which disease we are talking about. This is elementary and should be the basis of what other demands are built upon. MEAction and their supporters are demanding to use IOM criteria (with CFSAC recommendations), however, that is not the disease myalgic encephalomyelitis – it is IOM/SEID.

       The new ICD-10 codes for myalgic encephalomyelitis – G93.3 are currently enabling doctors in the US to diagnose patients with ME – and indeed some doctors have started doing that. This coding is different and separate from the ICD-10 coding for CFS. IOM/SEID has currently no coding and the IOM panel advised separate coding for their criteria.

       Using the name myalgic encephalomyelitis without the proper criteria for ME is deceptive and will result in harm to patients.

       To protest is great and I am a champion of protesting the government for our rights. It is exciting when there are visible ways to share awareness. One must be clear though what disease they are representing. The purpose of advocacy is to do it right. A protest that advocates for ME/CFS, CFS or SEID is not a protest for the neuroimmune disease myalgic encephalomyelitis.

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4. Thank you for publishing your comment, Gabby. There are a great many ME patients who disagree with ME Action Network’s positions and even more who disagree with their very questionable tactics. Voices who disagree with them are immediate shut out. I believe they are missing excellent ideas from independent advocates who should be included and that their actions would be much more successful if they allowed dissenting voices to participate.
   Patricia Carter, JD

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   • Patricia, you could participate right now if you had any interest. All the groups are open to anyone. I’ve never seen you at a single meeting or event or phone call, nor have you ever sent us an email. The door is open, although I am not sure where your narrative of “we shut out people who disagree with us” comes from. Or which “questionable tactics” you are referring to.

     We incorporated Gabby’s feedback into our qualitative report, just like we did every other patient who emailed us, and the survey was open to all.

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5. After reading the responses from people representing ME Advocacy Network, I have something to add to my comment above:

   The arrogance of those who are running ME Action Net is appalling. They exclude anyone who disagrees with them and then they make public statements that they are speaking for all of us. They certainly do NOT speak for me!

   Patricia Carter, J.D.

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6. The problem is that MEAction does whatever it wants regardless of the harm it causes. Not enough time has been spent earning the respect of those who have worked for years to gain an inch. Too much time trying to take over everything with so little experience will hurt all of us.

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7. I’m concerned that what could and should be a heathy discourse on strategy is portrayed as negativity and personal attacks. The disease criteria we are currently burdened with are based on personal bias and political motivation. Thirty years of manipulation by NIH, CDC, and other health-related agencies does not inspire confidence. There is enough history here to make a congressional investigation plausible, if the issue is framed correctly. It is from this perspective that I started my blog years ago.

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8. My statement that voices who disagree are “shut out” comes from my own experience of posting numerous comments on ME Action Network’s website which are always deleted immediately and never published. It is also based on the experiences of numerous friends, including those of Gabby Klein, which she describes in this blog post.

   Liz Willow, I disagree. It does not help any of us when we deny reality, and the reality is that some people who say they are “advocating” for ME patients actually use personal attacks as a tactic to disarm those wit;h whom they disagree. Remember James Coyne’s and Cort Johnson’s personal attacks on Jeannette Burmeister? And consider Jen Brea’s personal attack, described in this blog,, against Gabby Klein. No, sticking our heads in the sand and pretending we are all united denies the fact that some who pretend to “advocate” on our behalf are really only pursuing their own agendas. These people are actually helping the the NIH, the CDC and other health-related agencies deny the existence of the ME epidemic–and some of them have been doing so for three decades! (CFIDS Assn of America, now renamed Solve ME/CFS Initiative, with whom ME Action Network partners) We cannot unite with those who are acting against our interests.

   Patricia Carter

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   • I was referring to Jen’s and others habit of portraying any disagreement with MEAction’s policies as negative or personally attacking. I certainly agree that there have been personal attacks by Coyne and others that I deeply condemn. I do believe MEAction is ignoring and downplaying many voices, which makes it anything but a neutral platform.

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9. I agree with Gabby that the current demands do not reflect the desire of the majority of the M.E. community.
   I personally feel the International Consensus Criteria (ICC) is the best criteria currently published and am deeply grateful for the experts in our field who wrote this as well as the Physician’s Primer that goes along with it. Here is a link to the criteria: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
   This primer is my “go to” guide to help my doctor understand this illness: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

   I am not a fan of the IOM report “Beyond ME/CFS”. I feel it has a number of flaws. Although the IOM states the disease described is not a psychological disease and a primary symptom is exertion intolerance, it does not give full information about the immune system abnormalities nor the neurological symptoms recognized by the ICC. The IOM is an overly broad criteria meaning that many people who have a variety of illnesses could be included with those of us with M.E. Even those who wrote the report said there is not enough information therefore more research is needed.
   After 27 years of being ill and watching the U.S. health agencies use overly broad criteria leading to research on patients whose illness is not the same as what I have, I am uncomfortable with repeating that same mistake.

   Research on the wrong cohort leads to treatments which are ineffective or dangerous to M.E. patients. I truly believe we must be firm about insisting research on M.E. patients be done using the experts’ criteria in order to finally get some real answers.

   I think one of the best ways to move our M.E. community forward is for every patient to become educated about their own diagnosis. By knowing who we are and who the researchers are studying we can have a huge impact without spending a dime.

   Information about each of the different criteria can be found here: http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf

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