Patient-led Research Collaborative and Fund for Long COVID

Discussion in 'Long Covid news' started by rvallee, Apr 22, 2022.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Moved post. This thread collects together several threads on the same topic.

    Cryptocurrency investors (well, in this case inventor) are contributing more to researching a major health crisis than all medical institutions combined. The UK's NIHR funding was mostly wasted on pet projects and the NIH had to be ordered to do it, and are botching it. Those are the 2 possible exceptions, depending on how things happen in the Netherlands.

    Buterin is the inventor of Ethereum, a Bitcoin-like cryptocurrency (with many other features but roughly speaking). This is good use of money, even though this fund gets nothing directly in return. This is the job of governments, of public institutions.

    https://twitter.com/user/status/1517565303449919488
     
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  2. Andy

    Andy Committee Member

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    Merged thread

    MEAction/Patient-Led Research Collaborative: Call-To-Action For California: Centers Of Excellence in Long COVID along with ME/CFS, May 2022


    "We have a golden opportunity to secure substantial funds to address the clinical care crisis in ME/CFS and Long COVID, but your help is needed NOW. #MEAction and the Patient-Led Research Collaborative have put together a proposal that calls for the State of California to appropriate $120 million for Centers of Excellence in Long COVID along with ME/CFS. Assembly Member Bill Quirk has agreed to be chief sponsor and has submitted a budget request for this amount.

    To get across the finish line, we need you to email your California State Senator and Assembly Member NOW. There is no time to waste, as major decisions will be made in mid-May."

    https://www.meaction.net/2022/05/02/call-to-action-for-california/
     
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  3. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Merged thread

    USA: "Towards a Patient-Driven National Research Action Plan: Recommendations for the National Research Action Plan on Long COVID"


    A document with recommendations for Long Covid research, policy, and communication was announced on twitter today by the group Patient-Led Research Collaborative for Long COVID.


    This document was created jointly by multiple patient groups in preparation for the White House and HHS briefing on the Long Covid plan, scheduled for July 15 at 4 PM Eastern Time. The registration link is here - https://pitc.zoomgov.com/webinar/register/WN_B7res8ipTXKLPbnkLcAEvQ

    Here's the introduction paragraph from the document:
    Tweets from the announcement thread are in the quote box below:
    The July 15 briefing was announced on a different thread (see - https://www.s4me.info/threads/long-...d-social-media-2022.24510/page-28#post-426240 ). But I thought this document with recommendations deserved its own separate thread.

    I'm hoping folks with better cognitive ability and medical background than myself can read and discuss these recommendations!
     
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  4. Hutan

    Hutan Moderator Staff Member

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    Not claiming either of those things, but I have read it. It's tempting to go through it section by section and pick it apart, but that would take a long time and probably wouldn't achieve much that is good.

    I think it's a good document with some interesting ideas.

    It's obviously a consensus document, and so the list of related diseases is wide and somewhat arguable - MCAS and EDS are in there for example. The way the research questions handle these is reasonable though e.g.
    Given the high level of acceptance of these ideas, good quality research to try to bring some answers would be helpful. It's interesting that Gulf War Illness isn't included as an associated condition.


    I feel the same about the list of treatments that are given as examples. I'm not sure that I'd say some (or even any) of those have shown promise, but a lot of patient energy is being spent on them, so some good quality studies done by people with the required level of equipoise would be very useful.
    This was a very interesting idea, that potentially could make the quality of Long Covid and ME/CFS research better:


    The one thing that I'm most disappointed about is the lack of a clear discussion of the problems of unblinded/ poorly controlled studies with subjective outcomes. To me, reducing bias from this problem is the one key thing that would improve Long Covid research. Even though there is a section on Research Design, it's not there.
    Good that PEM is mentioned, but to not highlight the unblinded/uncontrolled +subjective outcomes problem makes me feel as though the Long Covid and parts of the US ME/CFS community have missed the key lesson from the UK BPS debacle. It makes me want to yell.


    It's an aspirational document. It makes a lot of ensuring diversity in trials and policy-making, which is good, even if impractical for some studies. For example, some studies may need to focus just on biological women, or just on men, or on people with a particular severity level or on people without a co-morbidity. It would be a shame if a study did not go ahead because the study question didn't fit people of every category. I liked the mention of research needing to consider menstrual cycles.

    I thought the comment about compensating patients for engagement was interesting. It has struck me before, that it is the people who don't have an income and who are sick who are often the ones most expected to volunteer their time - to participate in trials, to be on patient advisory groups. I think it is right that anyone participating in research or providing advice should be paid to do that - their time is important. Perhaps if the people were paid, it would increase the respect accorded to them. If compensating participants made research more expensive, then maybe the way research is funded needs to change. It's a bit like saying the use of slave labour couldn't be stopped because it would make food production more expensive. It's controversial, of course we don't want to slow research, but the assumptions made about patients' time are worth thinking about. Perhaps less research, but research that is done really well, would get us to useful answers more quickly.

    There's lot's more in there, lots more that could be said.
     
    Last edited: Jul 9, 2022
  5. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Merged thread

    RFP—Patient-Led Research Fund—Long Covid/MECFS


    https://patientresearchcovid19.com/projects/patient-led-research-fund/

    Posted elsewhere but needs its own thread.


    The Patient-Led Research Fund is a $5 million fund which will provide grants to Long COVID biomedical research projects, awarded by a panel of patient-researchers with expertise in post-viral illnesses and lived experience of Long COVID and/or ME/CFS. Biomedical research projects are eligible, including diagnostic devices, test development, and clinical trials.


    Request for Proposals

    Application Deadline: September 23, 2022 11:59 PT

    Award Information:

    Patient-Led Research Collaborative is awarding $5 million (USD) in grants. We are planning to fund multiple projects and are accepting proposals between $50k to 1.2 million in cost. These are one-time grants, with projects to be completed ideally within one year, though consideration for up to two years will be granted for projects with larger scopes. Each awarded project will come with two paid (by PLRC) patient-researchers, who will act as consultants on your study for several hours a month. These awards will be distributed in crypto (USD Coin, which is a stable coin tied to the US Dollar) so your organization will need to be able to accept crypto. (If your grant is funded, we can direct you to resources to set this up, and can accept caveats on a case by case basis).

    These grants will be used to support biomedical research studies into Long COVID and associated conditions (e.g. ME/CFS, POTS, EDS/connective tissue disorders, small fiber neuropathy, structural spinal conditions etc.). Eligible studies include those researching diagnostics, biomarkers, pathophysiology, drug repurposing investigations, and treatments/clinical trials (including, but not limited to, drug repurposing, botanicals and supplements, biomedical devices). We encourage and prioritize studies with multiple cohorts and comparator groups of related illnesses (e.g. Long Covid, ME/CFS, hEDS, dysautonomia/POTS etc).

    We also especially encourage and prioritize proposals on areas of research identified by patients as critical. In no particular order, these include (but are not limited to):

    • the role of hormones in symptom expression
    • studies on mechanisms driving connective tissue disorders and connective tissue damage in infection-associated diseases, and therapeutics to repair and strengthen connective tissue and structural spinal conditions
    • overlaps with inflammatory conditions like endometriosis
    • how the menstrual cycle impacts the illness, and the impacts of pregnancy on illness
    • antivirals including antivirals against reactivations like EBV
    • addressing and understanding vascular dysfunctions like clotting
    • addressing and understanding mechanisms of cerebral and general hypoperfusion and hypovolemia
    • mitochondrial treatments and metabolomics research
    • treating and understanding sleep issues, unrefreshing sleep, and circadian rhythm dysfunction
    • addressing brain fog, neurocognitive issues, and neuroinflammation
    • addressing and understanding immune dysfunction and mast cell activation
    • treating autonomic and nervous system dysfunction
    • studying mechanistic overlaps and the relationships between related and comorbid illnesses
    • additional triggers of ME/CFS and connective tissue disease, including mold exposure
    • treating and researching post-exertional malaise (PEM) and fatigue
     
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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This seems to be international (judging by the list of members of the Research Fund Panel) .
    @JaimeS is on it.
     
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  7. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Mold exposure doesn't seem to have any credible evidence behind it as far as I know. I wouldn't mind if a good study was conducted, it just seems a bit odd to highlight this topic.

    Mast cells and and hypermobility / connective tissue problems seem to be speculative and perhaps relevant only to a small subgroup of patients.

    The ME spine story is evolving and likely to do much more harm than good. This will harm the credibility of patient advocacy. I don't exclude that it might be right for some but trying to associate ME with this is really wrong at this point in time.

    The biggest potential for progress to me seems to be in those areas where dysfunction has been credibly established, e.g. cerebral blood flow and orthostatic intolerance, metabolic abnormalities, preload failure, etc. We need to figure out what is causing these problems. It would also be good to better understand how and why infections play such an important role. There is also the question of what is going on in the brain.
     
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  8. Trish

    Trish Moderator Staff Member

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    There are lots of useful areas for study on the list.

    Some seem to lack evidence of relevance beyond anecdotal to most pwME and pw LC. But given that topics like hEDS, MCAS, neck structural issues and mold have become dominant in some parts of the patient community, I think it could be useful for their association, or not, with ME/CFS/LC to be properly investigated biomedically and epidemiological to find out whether the association is real. That of course relies on the studies being conducted well and impartially.
     
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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That is the rub. It would be better if the aims explicitly indicated that there is a need to confirm these speculated processes r associations actually exist. That might not be good marketing but it would be a pity if money is diverted to ill thought through research.
     
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  10. Andy

    Andy Committee Member

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  11. Trish

    Trish Moderator Staff Member

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    True, but that’s only one of a long list of people with a wide range of scientific and medical experience on the panel. I wish them well and hope some really good studies get funded.
     
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  12. Andy

    Andy Committee Member

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  13. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    PATIENT-LED RESEARCH COLLABORATIVE ANNOUNCES $4.8 MILLION IN BIOMEDICAL RESEARCH AWARDS FOR LONG COVID AND ASSOCIATED CONDITIONS
    https://patientresearchcovid19.com/press-releases/

    The Patient Led Research Collaborative has announced the winners of their calls. They give 4.8 million to research projects, which is a rather big amount for a charity, at least compared to ME/CFS charities.

    The good news is that the list of winners includes lots of ME/CFS researchers such as yarred Younger, Moreau, Selin & Gil, Wenzhong Xiao of OMF etc.
     
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  14. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Decent!

    I’m not a big fan of LDN/Younger, but if they give him cash, they should put tight performance timelines on him as he seems to have had a lot of “ongoing” projects that never seem to have gotten published.
     
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  15. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Also, if possible, hoping that @Jonathan Edwards could comment on this one—thanks.


    1. A pre- and postoperative study of patients with ME/CFS operated for foraminal stenosis – Prof. Per Sjogren, Dr. Bo Bertilson, Dr. Helena Huhmar, Dr. Lauri Soinne, Dr. Olli Polo, Dr. Jonas Bergquist, and Dr. Bjorn Bragée – Bragee ME Clinic, Stockholm
    In a 2020 study based on MRI findings, Dr Bragée et al. showed that many patients with ME displayed narrowing of the spinal and/or foraminal canals in the craniocervical region. Unexpectedly, over 50% of the 229 studied patients also had hypermobility syndromes, a known risk factor for ligament injuries in the spine. Of the 115 patients with prominent neck pain, 80% had craniocervical obstructions. This study will examine whether surgery that relieves pressure on nerves (cervical radiculopathy) and corrects cervical obstructions can turn around the often-poor prognosis of patients with ME and have an effect on not only the radiculopathy but also other aspects of their illness.
     
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  16. Andy

    Andy Committee Member

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    "A pre- and postoperative study of patients with ME/CFS operated for foraminal stenosis – Prof. Per Sjogren, Dr. Bo Bertilson, Dr. Helena Huhmar, Dr. Lauri Soinne, Dr. Olli Polo, Dr. Jonas Bergquist, and Dr. Bjorn Bragée – Bragee ME Clinic, Stockholm

    In a 2020 study based on MRI findings, Dr Bragée et al. showed that many patients with ME displayed narrowing of the spinal and/or foraminal canals in the craniocervical region. Unexpectedly, over 50% of the 229 studied patients also had hypermobility syndromes, a known risk factor for ligament injuries in the spine. Of the 115 patients with prominent neck pain, 80% had craniocervical obstructions. This study will examine whether surgery that relieves pressure on nerves (cervical radiculopathy) and corrects cervical obstructions can turn around the often-poor prognosis of patients with ME and have an effect on not only the radiculopathy but also other aspects of their illness."
     
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  17. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    ⬆️
    Nostradamus
     
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  18. Grigor

    Grigor Senior Member (Voting Rights)

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  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It gives me the shivers.
    From what I know of the background and the people involved this is not something to be enthusiastic about.
     
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