Stretchy skin - COVID Long Haulers

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#1

There have been several posts over the past few days regarding theories on PSSD and Long COVID having potentially similar mechanisms. I know this forum is very particular about theories/speculation; however, I find it interesting that you can read about how some people with Long COVID have developed Ehlers Danlos Syndrome like symptoms (ie stretchy skin, hyper mobility, etc.) just like some people with PFS have developed. I have this myself from taking Finasteride. Specifically, I have read about these accounts on the ‘covidlonghaulers’ Reddit page. Definitely something to check out if you haven’t already. I have searched almost every major symptom PFS patients can experience on that forum and there is a post about almost all of them that people with Long COVID are suffering with as well - anhedonia, depression, sexual dysfunction, stretchy skin, voice changes, muscle loss, dry hair/skin, weakness, fatigue, facial changes, cognitive issues, speech disturbances, lack of sweating, gum recession, etc. These are all anecdotal of course, but we should take them seriously as we know our symptoms aren’t just psychosomatic like doctors have told us.

I just want to point out that if these can mechanisms are the same, this could be very good news for our community. Long COVID is focused on much more than our syndrome is in the medical community and there is a lot of effort it to find a viable treatment/cure. I think this could be big for us, guys!

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#2

We know that PFS and PSSD have many symptoms in common and that patients who have had COVID for a long time also have symptoms very similar to the two syndromes mentioned. In research, patients with PSSD have tested positive for G protein autoantibodies. It would be interesting if someone with PFS could have the same tests for G protein autoantibodies, as it would explain many issues such as these feelings we have of inflammation in the body.
Ps: I am not creating this post to discredit the research supported by the foundation, because it will be 3 months since my life was completely changed after using 5 alpha reductase blockers and I, like all of us, have the foundation as the only hope of discovery cure for our condition, but I think it’s super valid if someone could do the tests to see if there is also this relationship of confirming this autoimmune property in our condition, since we have so many symptoms in common.

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#3

I don’t know anything about long COVID, but is there a chance that it could have the same mechanism as PFS? I read somewhere that Germany was putting 100 million euro into long COVID research.

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#4

I have long covid sence 2 years and Im in really bad shape. I feel that long covid makes make every symtoms of pfs worse. But moste it makes you extremely fatigue

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#5

I am.not a doctor or an expert, but BC007 seems to be working for Long Covid and might work for PFS and PSSD.

The drug removes certain GPCR autoantibodies. These AAKs are also involved in other diseases. Cardiac arrhythmias, glaucoma, diabetes 2. In a study of glaucoma patients in 2021, 2 patients also happened to have Long COVID. After infusion, they had no more symptoms. Therefore, they specifically treated 3 people with Long COVID with BC007. Successfully! Then all available doses of BC007 were used up. Since then they have been trying to get the money for a new batch of the drug. It is currently the most promising drug.

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#7

Hey have people tested for those antibodies?

#8

I think the question is what symptoms did it resolve - were they sexual, androgen related ones.

#9

“other stubbornly ambiguous chronic syndromes”

They mentioned us!

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#10

Where ? Saw CFS mentioned

#11

“other stubbornly ambiguous chronic syndromes”…I was being facetious-ish.

This sure sounds familiar:
Lucia, a member of the Patient-Led Research Collaborative, emphasised that people with long Covid do not only have to deal with their many health issues.

They also have “to contend with disbelief or dismissal from the medical community or from within their social circles”, she said.

Patient-Led Research Collaborative
The Patient-Led Research Collaborative is a group of Long COVID patients and patients with associated illnesses such as ME/CFS and POTS, who are also researchers

I think all the patient-led research groups into these conditions should team up so we can all be disappointed together I mean share our theories and findings.

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