ME International Joins the Long COVID Alliance
Posted: 03 March 2021
Dear fellow ME patients,
The ME International (ME-I) Board recently made a challenging decision to join the Long COVID Alliance. This Alliance, led by Solve ME/CFS, has a goal of making sure that ME/CFS patients are considered in the upcoming NIH Long COVID research funding awards. The US Congress appropriated $1.15 billion to the NIH for this research. At this time there are 50 organizations including ME-I who have signed this Alliance.
We are participating in this alliance BECAUSE it is important for: The ME patient population as defined by the IC Primer NOT be confused with the ME/CFS patient population.
There are valid concerns raised by the patient community since little progress has been made with respect to differentiating ME from CFS. We are aware that the decision may be viewed as diffusing our emphasis on ME. It is definitely not the case. ME-I remains committed to the position of supporting ME patients as defined by the IC Primer.
ME-I views the IC primer as a strong foundation for defining what ME is and how best to diagnose and treat it. We believe that this foundation provides a solid framework that can be built on with international patient input.
In making the decision to join the Long COVID Alliance, we considered the following benefits and challenges:
- Advocating that research dollars are allocated to addressing ME as defined by the ME- ICC patient community
- Identifying clinicians and researchers that are best suited to represent ME patients
- Enhancing communication with other organizations who are confounding ME with CFS
- ME-ICC definition is not recognized
- ME-I patient community voice is diminished in Long COVID Alliance communications
- Cycling back to what happened previously to the ME-ICC Community
ME-I is committed to managing these challenges by:
Directly communicating our position to NIH, CDC, clinicians, and researchers independent of the Alliance
Partnering with medical societies and other patient advocacy groups as appropriate
Exiting the Alliance if our voice is not heard
At the end of the day, we felt it was important to have a voice at the table so we can collaboratively encourage NIH funding to be spent in a way that will benefit the ME community.
If you have questions or concerns, please email them to firstname.lastname@example.org. We look forward to your insights and will be requesting further input on ME-International social media sites.
Jim Lutey, President
Rosie Cox – 3/3/2021 10:47:12 am
I’m not sure this is an entirely sensible move. Tbh I’m rather saddened that MI has felt the need to join this. The notion of being ‘inside the tent’ so to speak has been used before. Generally speaking being ‘inside the tent’ usually requires co-opting the belief system of the overarching tent such that the suggestion that influencing ICC-based policies in a presumably hostile-to-ICC environment is likely to make progress is optimistic to say the least. Personally I prefer dogma to be easily identifiable. I also prefer knowing where an organisation draws its boundaries, its red lines and this decision has rather skewed that wrt MI imo.
Reply – MEI Board of Directors – 3/4/2021 07:00:56 am
Thank you for taking the time/energy to give ME International feedback. We will continue to advocate ME as a separate disease from CFS and promote the ICC and IC Primer as the diagnostic criteria in any and all research that may affect patients with ME. We will not compromise our position with any of the 50 organizations that have joined the Alliance, the NIH, CDC or any other government agency. The cards are stacked against us, as usual, but we need to try to make a difference. ~ ME International Board of Directors
Wendy Boutilier – 3/3/2021 01:11:56 pm
To accept Long Covid kits to drop ME and that’s unacceptable. Adding Long Covid is adding more CDC confusion to an already overloaded confused state.
As David Tuller states: “Maybe they should read David Tuller who makes some very good points: “That variety is better expressed through the scientific name it has been given: Post-Acute Sequelae of SARS-CoV-2 infection (PASC). In other words, there are lots of different sequelae–not just one entity called Long COVID.
At the same time, there is cause to be wary. This pandemic is now early in its second year, so so-called Long COVID is still a relatively short phenomenon–especially when compared to the decades of illness experienced by many with ME/CFS. Reports of persistent symptoms are known to be common after many viral infections. It is also known that these cases self-resolve most of the time–even if it can take a year or more in some cases.
If it is asserted prematurely or simplistically that Long COVID and ME/CFS are somehow the same, what happens if most of these legions of Long COVID patients get better in the next few months or over the next year? It could easily be presumed that the “multi-disciplinary rehabilitation”–or any number of helpful or non-helpful interventions–led to improvements, even if the recoveries would have happened in any event. In such a scenario, that advice could be presumed to be applicable to ME/CFS patients. Before declarative statements can be made, we need to see a lot more data.”
Reply – MEI Board of Directors – 3/4/2021 07:02:37 am
Thank you for taking the time/energy to give ME International feedback. We will continue to advocate ME as a separate disease from CFS and promote the ICC and IC Primer as the diagnostic criteria in any and all research that may affect patients with ME. We will not compromise our position with any of the 50 organizations that have joined the Alliance, the NIH, CDC or any other government agency. The cards are stacked against us, as usual, but we need to try to make a difference. ~ ME-Intl Board of Directors
Gabby Klein – 3/4/2021 01:29:20 pm
I feel compelled to leave a comment on this blog to express my deep disappointment in ME International’s decision to join Solve M.E.’s Long Covid Alliance.
As an explanation of your board’s decision, you state: “We are participating in this alliance BECAUSE it is important for: The ME patient population as defined by the IC Primer NOT be confused with the ME/CFS patient population.”
ME International prides itself in representing and advocating for pwME as defined by the International Consensus Criteria (ICC) as a distinct disease – apart from chronic fatigue syndrome (CFS) and idiopathic fatigue. The reason why this distinction is important is because in the past three decades HHS (CDC and NIH) have repeatedly attempted to erase the distinct disease by lumping various “fatigue” and psychosomatic conditions as part of the “me/cfs” umbrella.
This new Long Covid Alliance is just more of the same. There is currently zero scientific proof that Long Covid has anything to do with myalgic encephalomyelitis. Many long covid patients have had organ damage which justify the fatigue and other symptoms suffered by the patients. This organ damage is not something seen with pwME. Even if some of the long covid patients will eventually turn out to actually suffer from ME, it will only be a small percentage. Lumping them all together including me/cfs patients will only confuse and set back meaningful study results and potential successful treatment recommendations.
The basis of this Alliance which your org just joined is the lumping of fatigue and post viral conditions which is the opposite of what I thought ME International’s stands for. By joining this alliance, you are agreeing to their stated mission of lumping all post viral conditions. I understand the pressure as an organization, especially a pretty new one, to want to be included (with 50 other orgs) and have a coveted “seat at the table”. I understand this pressure because as a member of the advisory committee of MEAdvocacy we had times when we were challenged to make decisions on similar invitations. We chose to stay true to our mission and continued to advocate and be a voice for people with myalgic encephalomyelitis.
I understand why some other orgs have joined this alliance. They (in my opinion, mistakingly) believe that there is strength in numbers and by lumping vague conditions together. They also believe that now that long covid is garnering vast international attention and monumental NIH funding, they can benefit by piggybacking on that attention and especially the 1.5 billion NIH has just released for long covid research.
I am worried that the outcome of this alliance will further erase the distinct disease ME. Moreover, research done on these patients could result in recommendations for treatment which will not only be unhelpful for pwME or worse, be harmful for us.
“Stand up for what you believe in even if it means standing alone.”
― Suzy Kassem
Reply – ME International
3/5/2021 08:29:21 am
Thank you for taking the time to voice your feelings on this decision. The ME International board members will take concerns raised into consideration as we move forward. Be assured that we will not compromise our position and will try our best to influence other organizations and government agencies that ME is a separate disease and we will continue to advocate the ICC and IC Primer.
Eileen – 3/4/2021 04:26:24 pm
Gabby wrote a scientifically and politically factual and compelling commentary on why ME-I should not have joined the Solve “Alliance for Long COVID,” and I agree with her views. I hope ME-I will reverse their decision/position.
Reply – ME International
3/6/2021 07:22:57 pm
Thank you for giving us your valuable feedback. As stated in our blog, we will be exiting the Alliance if our voice is not heard. Our voice will be heard, whether the NIH or any other agency listens to our voice is yet to be determined. The Alliance is in startup mode so until defined activities are identified, we do not plan to make any decisions that affect ME-I’s position.
Deborah Waroff – 4/2/2021 05:47:32 pm
I rather doubt this “Alliance” can deliver material amounts of funding for research on ME or on “CFS,” (whatever the latter is.) Fauci has always been the roadblock and there seems no reason to expect change. What is more, “Solve’s” approach to lobbying by communicating from California, with an annual excursion to D.C., just doesn’t get you far. That’s why there are mega thousands of lobbyists in DC.
However, MEI could use their initial participation as an opportunity for marketing and communicating the truth about ME. You could serve a worthy purpose by saying and writing “ME AND” “cfs” at every opportunity, whether in speech or correspondence. Use the full name, Myalgic Encephalomyelitis, often. And be ready to explain why. Persons from MEI should be ready to furnish everyone, whether digitally or in hard copy, tidy lists enumerating the distinctions, profound as they be. This might best be carried out in the persona of a concerned science nerd — never be angry or argumentative.
People who think there is a singular noun spelled “ME/CFS” after all are suffering from ignorance and bowed under decades of US federal agency deceit. They ought to be afforded the opportunity to learn the truth.
Further, I see some usefulness may be derived from this initial approach by studying the Alliance for whatever can be learned — so long as the MEI name is NEVER compromised or mistaken as endorsement of the “ME/CFS” singular noun. Stand ready to withdraw if there is any threat of such.
Reply – ME International – 4/8/2021 01:10:55 pm
Thank you, Deborah, for your comments on ME International joining the Long COVID Alliance. We agree that joining the Alliance is an opportunity for ME International to continue to communicate the truths about ME and our position that ME is a distinct disease apart from CFS or any other “fatigue” disease. (Please see our position paper on our Board of Directors page. We already have and will continue to advocate our position among the members of the Alliance and others. Be assured that ME International will not compromise our position. Our representatives will continue to attend Alliance meetings and participate to the extent that our resources allow. Our voice will be heard, but whether we can truly influence action in our favor will be a tall order. At least many more health-related organizations will hear our position. Thank you again for your interest. ~ ME International