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ME/CFS Science
@mecfsscience.org

1) A new randomized trial in Long Covid patients tested Temelimab, a drug that targets a potentially pathogenic protein (HERV-W ENV) from endogenous retroviruses. Unfortunately, the results are pretty clear: Temelimab had no beneficial effect.

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Ona Albizu - PhD MSc BD
@onaalbizu.bsky.social

I was at the first selection but I was negative to that protein so didn't get the drug. But I'm a responder to anti TNFalfa and IL17 monoclonals. I wonder why these two are not tested, viewing there are high values for a subgroup of pwME at several papers.

ME/CFS Science
@mecfsscience.org

2) Endogenous retroviruses are virus remnants that we inherit and are already inside our genome. Almost all of them are broken and switched off. The hypothesis, however, is that a viral infection such as SARS-CoV-2 may reactivate some of their functions.

ME/CFS Science
@mecfsscience.org

3) After activation, some HERV-W sequences produce an envelope protein ("ENV") that the immune system reacts badly to. Temelimab binds to this protein to make sure it no longer acts as a false alarm for the immune system.

ME/CFS Science
@mecfsscience.org

4) There were a couple of Long Covid studies that reported increased HERV-W ENV in Long Covid patients. This trial therefore used this as an inclusion criterion in their trial. It focused only on LC patients who were positive for HERV-W ENV in their blood.

ME/CFS Science
@mecfsscience.org

5) This was a large placebo-controlled and international trial: it recruited 203 patients from three European countries (Switzerland, Italy, and Spain) involving 14 centers. The primary outcome was the PROMIS Fatigue SF 7a scale.