Patient-Led Research Collaborative & PAWS/PSSD Relationship to Long-COVID

[PeaceInside]

Hi Everyone!

 

I was recently interviewed by a cultural anthropologist at Georgetown University (Emily Mendenhall) (who is writing a book on functional neurological disorder being the modern day version of hysteria-in relation to women's health) on my experience of PAWS/PSSD and how I feel it is related to Long-COVID and many other seemingly "neuro-immunological" conditions. This was both to raise awareness about our community and begin a more cross-disciplinary conversation amongst researchers and scholars looking into these health issues.

 

Emily pointed me to the Patient-Led Research Collaborative (https://patientresearchcovid19.com/) who has been doing patient-led research on Long-COVID and related conditions. They are well funded and well connected to both the larger medical community and federal bodies. I am hoping to speak with one of the women who runs the institute (Lisa McCorkell), at the behest of Emily, to discuss the latest research in PAWS/PSSD and its relationship to Long-COVID, as well as highlight the other areas of research, advocates, and scientists who are working in this particular community and the potential for collaboration and advocacy for our issues.

 

Most interestingly, I took their COVID-19 Patient Experience Survey-this survey could easily be translated to our community without changing almost any questions or language, just interchanging the word "COVID" for "PAWS and/or PSSD", which was truly interesting and something I am hoping to discuss with Lisa; there was almost no differentiation between symptoms and experience in this Long-COVID survey than there is for PAWS and PSSD. Importantly, this institute accepts patient-led theories on Long-COVID AND its related conditions. Emily suggested that I write a paper on PAWS, PSSD, and its relationship to all of these conditions in order to raise more awareness for true reality of psychiatric medication withdrawal for many and why the medical community, regulatory bodies, society at large, etc needs to take it seriously. Wanted to update everyone on this and say that there are people out there who really do care about making this experience better and are actively working on it even if we can't see them or know them. There is hope!! I will keep everyone updated on how this progresses and whether or not we can get some sort of larger, mass, scientific survey out there for us to participate in, in the USA on PAWS/PSSD (as I have seen begun in other countries).

 

Much Love to All

[N2deep]

A lot of the symptoms are indeed the same (...as noted in my signature). I'd like to see a whole lot more research funding for both conditions. The organizations doing the most for Long COVID, like Patient-Led and IMO the best, POLYBIO, are funded by donations ... Need more government funding for biomedical research.

[Tom2020]

I have ME/Chronic Fatigue Syndrome and I think there are similarities between it and PAWS. In fact, I thought SSRIs were protecting me from ME flare-ups but eventually realised reducing my SSRI was triggering PAWS, which I mistook for ME. ME is very closely related to long covid, and many people with long covid are being diagnosed with ME.

 

I've been completing this survey https://www.meaction.net/epi/ "The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease) is a survey-based study to probe more deeply into ME/CFS, Long COVID, POTS, hEDS, and MCAS",  which aims to be "the richest dataset on complex chronic disease ever created". It asks about an impressive array of symptoms and sounds like it may overlap with the patient-led long covid survey you mentioned.

 

I'd like to mention the Open Medicine Foundatiion, which is doing a lot of amazing biomedical research. https://www.omf.ngo/ They're focussing initially on ME and long covid but are interested in other multisystem complex diseaes. The OMF is a big deal. They've raised $45 million and have a Nobel laureate on their board.

 

It would be great if we could get both surveys extended to people with PAWS and get the OMF to work on PAWS. The question is how. Is there any group that could make this happen? The ME survey link is hosted on the ME Action website. There are many patient advocacy organisations for ME but ME Action seems to be a big and active one. Patient advocacy is one of the strengths of the ME community, and way ahead of PAWS from what I've seen.

 

Good luck with your efforts @PeaceInside!

[PeaceInside]

Thank you for this information @Tom2020! I am going to take that survey to see how it relates to the other, as well as how it reflects PAWS. 
 

I agree about getting these surveys and these research institutions to include PAWS and (I will include) PSSD in their research because there is so much overlap with these other conditions and PAWS and PSSD are equally complex, chronic conditions. 
 

I have been thinking about your question of “how do we make this happen?” very much lately because I am watching the progression of research and advocacy in other countries on these issues and feel the stagnation of it for PAWS and PSSD in the US. There are great strides being made abroad, in the UK most recently for example, but not seriously here. 
 

We need a large, grassroots, community-led coalition effort to address these issues. 
 

I have been thinking of late of starting a US working group to begin that process-reaching out to all the contacts I have, in addition to trying to connect with likeminded individuals and organizations. 
 

Is this something you’d be interested in? I would like to create a more formal channel for people to take interest in this, but I am still working with PAWS and these things take time. 
 

I do think much more targeted, mass action is most urgently needed and everyone in the US who is even remotely related to this issue needs to begin to work together to make changes because this is a large public health crisis based on the number of people prescribed these drugs annually. 

[littlebird]

1 hour ago, Tom2020 said:

I've been completing this survey https://www.meaction.net/epi/ "The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease)

Ooh, this looks very cool! I've been looking for more resources on ME/CFS. The survey looks interesting, is it gameified? When I have less of a to-do list (procrastinating by being on here), I'll dive in and find out! I'm already intrigued by how they're presenting this. Thanks again, this is great!