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USA: The Long COVID Alliance (set up by SOLVE)
- Thread starter Andy
- Start date
Andy
Retired committee member
"Organizations operating in any domain often have to make a choice about whether to argue for change from outside the metaphorical tent or from inside. These options are often not cut-and-dried; both have benefits and costs. Advocates for the ME-ICC as the case definition that most accurately captures their illness often view their interests as diverging from those of patients diagnosed through other criteria. These sorts of differences can lead to intra-community tensions even as all are seeking related goals—more funding for research and better care for patients, however defined.
ME International, which represents patients identified through the ICC, joined the dozens of other entities signing on as part of the Long COVID Alliance—a choice that the group’s president called “challenging” in a recent letter posted on its website. I thought the letter represented an interesting demonstration of the kinds of factors that inform this kind of organizational decision-making"
I attended the Long Covid Alliance meeting earlier today, representing S4ME. There was quite a big group attending, maybe 45? at a very rough guess.
Like David, I was struck by the range of organisations and outlooks represented in the alliance. That can be a strength, but it is also going to present quite a challenge for Solve ME/CFS to manage.
For example, during the meeting there was a person promoting their research into biofeedback treatments for fatigue, and some people were interested in that and asking for contact details, while an immunologist for Yale asked about whether randomised controlled trials of the treatment were planned. Some people talked about mental health issues, and others were responding trying to make it clear that mental health issues are the result of Long Covid and not the cause. Some people are keen to know which clinicians they should be seeing, and are interested in a certification scheme for those clinics providing 'good' care (or a least a list of good clinics) and in ensuring that more people have access to these clinics. Whereas some people who have had ME/CFS for some time, like myself, think that, when it comes to medical care we are, for now, mostly trying to prevent harm, and are more interested in making sure research efforts are as productive as they can be. There are people recognising MCAS and EDS as part of the spectrum of issues and others who don't.
Emily Taylor and Jessie Brown and others at Solve ME/CFS are clearly working very hard on this. Although aiming to be international, there is a USA focus at present.
I think the details of the call will be posted on the alliance website, but I'll post a few bits and pieces I noted.
Like David, I was struck by the range of organisations and outlooks represented in the alliance. That can be a strength, but it is also going to present quite a challenge for Solve ME/CFS to manage.
For example, during the meeting there was a person promoting their research into biofeedback treatments for fatigue, and some people were interested in that and asking for contact details, while an immunologist for Yale asked about whether randomised controlled trials of the treatment were planned. Some people talked about mental health issues, and others were responding trying to make it clear that mental health issues are the result of Long Covid and not the cause. Some people are keen to know which clinicians they should be seeing, and are interested in a certification scheme for those clinics providing 'good' care (or a least a list of good clinics) and in ensuring that more people have access to these clinics. Whereas some people who have had ME/CFS for some time, like myself, think that, when it comes to medical care we are, for now, mostly trying to prevent harm, and are more interested in making sure research efforts are as productive as they can be. There are people recognising MCAS and EDS as part of the spectrum of issues and others who don't.
Emily Taylor and Jessie Brown and others at Solve ME/CFS are clearly working very hard on this. Although aiming to be international, there is a USA focus at present.
I think the details of the call will be posted on the alliance website, but I'll post a few bits and pieces I noted.
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If I have anything wrong (and I'm sure I do), please let me know and I'll correct things - or post below. The meeting was a bit like drinking from a fire hose, with a lot of information and a lot of people coming from a lot of different backgrounds with different levels of knowledge about Long Covid and ME/CFS. I didn't aim to note all the news. Some items already have specific threads in the S4ME forum.
Emily Taylor (e.taylor@solvecfs.org) and Jessie Brown led the meeting and would be good initial points of contact to followup most of the items.
April 19 Advocacy Day
My understanding is that this is a USA activity, where people will be meeting (online) with US politicians to talk about Long Covid. The advocates to talk to politicians have been identified, but Solve ME/CFS is looking for volunteers to help double check the advocates are organised for the meetings. This work will involve contacting around 10 people, and checking everything is sorted, to avoid the problem of a politician sitting waiting for a meeting and there being no advocate on the other end of the zoom call.
Data Harmonisation
Sadie Whittaker of Solve ME talked about the You+ME patient registry. She is keen to harmonise data collection efforts and is interested to work with anyone collecting Long Covid data. There are upcoming webinars on Long Covid research.
US - ICD-10 Code campaign
Much of the rest of the world uses ICD-11 to code illnesses. But the US uses ICD-10 with some codes specific to the US. The codes are used for important purposes - for reporting to government, for determining eligibility for benefits and insurance cover. Lisa ? and Mary Dimmock @Medfeb have been working on a campaign to add specific codes. I think a major aim of their suggestions is to separate out the various sorts of Post Acute Covid-19 Sequelae. ICD-10 doesn't have an ME/CFS code, just a CFS code. Lisa and Mary don't want to encourage use of the CFS code for Long Covid, as it brings a lot of baggage, and is equated with Chronic Fatigue.
NIH response to the Alliance's letter of 25 February 2021
NIH's Dr Patterson, Head of the Engagement Workgroup for Post Acute Covid-19 Sequelae, has replied to the letter, interested in a meeting with the Alliance. Emily noted that meetings will be held with just a core group rather than the wider alliance. The collective position will be that the definition of PACS needs to be narrowed, to separate out the cases of tissue damage from Long Covid.
It was note that the NIH has received over 200 applications for the first PACS RFA. Applications are now closed and are being considered.
Notice of relevant events
(some have been discussed on the forum already e.g. UK Royal Society Prof Brian Cox)
Research America Alliance Member call with Dr Koroshetz, Director of NIH NINDS - 15 April
This will be about NIH's work on Long Covid, including a soon-to-be-launched event. It probably won't be recorded. Emily is able to submit questions - you can send questions to her in advance of the call.
Working groups
A range of working groups are being formed in the Alliance e.g. International; BIPOC (Black, Indigenous, People of Colour); Online Presence; Research. It is hoped that these will drive things forward.
I mentioned Science for ME - that we are a resource for advocates and researchers.
Emily Taylor (e.taylor@solvecfs.org) and Jessie Brown led the meeting and would be good initial points of contact to followup most of the items.
April 19 Advocacy Day
My understanding is that this is a USA activity, where people will be meeting (online) with US politicians to talk about Long Covid. The advocates to talk to politicians have been identified, but Solve ME/CFS is looking for volunteers to help double check the advocates are organised for the meetings. This work will involve contacting around 10 people, and checking everything is sorted, to avoid the problem of a politician sitting waiting for a meeting and there being no advocate on the other end of the zoom call.
Data Harmonisation
Sadie Whittaker of Solve ME talked about the You+ME patient registry. She is keen to harmonise data collection efforts and is interested to work with anyone collecting Long Covid data. There are upcoming webinars on Long Covid research.
US - ICD-10 Code campaign
Much of the rest of the world uses ICD-11 to code illnesses. But the US uses ICD-10 with some codes specific to the US. The codes are used for important purposes - for reporting to government, for determining eligibility for benefits and insurance cover. Lisa ? and Mary Dimmock @Medfeb have been working on a campaign to add specific codes. I think a major aim of their suggestions is to separate out the various sorts of Post Acute Covid-19 Sequelae. ICD-10 doesn't have an ME/CFS code, just a CFS code. Lisa and Mary don't want to encourage use of the CFS code for Long Covid, as it brings a lot of baggage, and is equated with Chronic Fatigue.
NIH response to the Alliance's letter of 25 February 2021
NIH's Dr Patterson, Head of the Engagement Workgroup for Post Acute Covid-19 Sequelae, has replied to the letter, interested in a meeting with the Alliance. Emily noted that meetings will be held with just a core group rather than the wider alliance. The collective position will be that the definition of PACS needs to be narrowed, to separate out the cases of tissue damage from Long Covid.
It was note that the NIH has received over 200 applications for the first PACS RFA. Applications are now closed and are being considered.
Notice of relevant events
(some have been discussed on the forum already e.g. UK Royal Society Prof Brian Cox)
Research America Alliance Member call with Dr Koroshetz, Director of NIH NINDS - 15 April
This will be about NIH's work on Long Covid, including a soon-to-be-launched event. It probably won't be recorded. Emily is able to submit questions - you can send questions to her in advance of the call.
Working groups
A range of working groups are being formed in the Alliance e.g. International; BIPOC (Black, Indigenous, People of Colour); Online Presence; Research. It is hoped that these will drive things forward.
I mentioned Science for ME - that we are a resource for advocates and researchers.
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Andy
Retired committee member
The committee has agreed to add the forum's signature to this letter that the Long Covid Alliance is coordinating, that asks for the NIH to reveal what funding will be made available for Long Covid research in financial year 2023.
Normally for anything like this we would consult with the forum membership but with a tight deadline over the holiday period we didn't think that there was adequate time to do so.
Code:
https://docs.google.com/document/d/1FPqfgfG2QAvozds1u8v5zxprMJpj06G5gschdKkn4Ro/editNormally for anything like this we would consult with the forum membership but with a tight deadline over the holiday period we didn't think that there was adequate time to do so.
RedFox
Senior Member (Voting Rights)
I think that's prudent.
Press release
https://solvecfs.org/wp-content/uploads/2023/06/Final-Press-Release-IACCPAC-Initiative.pdf
Long COVID Alliance Announces Initiative to Strengthen Partnerships Amongst Diverse Disease Communities to Address Infection-Associated Chronic Conditions.
New project will identify common needs and actionable next steps for the infection-associated chronic conditions community.
LOS ANGELES, CA
–Today, Long COVID Alliance proudly announced it will begin establishing a new Infection Associated Chronic Conditions Patient Advocacy Coalition (IACC PAC) using $77,000 in grant funding through the CDC Foundation’s Infection-Associated Chronic Conditions Understanding and Engagement (ICUE) program. The project will bring together diverse disease groups and patient organizations to promote collaboration to address those challenges faced by people living with Long COVID and associated conditions, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, mast-cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), Lyme disease and other post-viral or infection-associated conditions.
....
More at link.
https://solvecfs.org/wp-content/uploads/2023/06/Final-Press-Release-IACCPAC-Initiative.pdf
Long COVID Alliance Announces Initiative to Strengthen Partnerships Amongst Diverse Disease Communities to Address Infection-Associated Chronic Conditions.
New project will identify common needs and actionable next steps for the infection-associated chronic conditions community.
LOS ANGELES, CA
–Today, Long COVID Alliance proudly announced it will begin establishing a new Infection Associated Chronic Conditions Patient Advocacy Coalition (IACC PAC) using $77,000 in grant funding through the CDC Foundation’s Infection-Associated Chronic Conditions Understanding and Engagement (ICUE) program. The project will bring together diverse disease groups and patient organizations to promote collaboration to address those challenges faced by people living with Long COVID and associated conditions, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, mast-cell activation syndrome (MCAS), Ehlers-Danlos syndrome (EDS), Lyme disease and other post-viral or infection-associated conditions.
....
More at link.