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There is a list of studies here: https://me-pedia.org/wiki/List_of_enterovirus_infection_studies It's strange how little mention the enterovirus in tissue studies get. On the surface, the studies seem interesting and convincing. Why aren't scientists trying to replicate this? PS: I now see...

A possible connection to the horrible heat-induced orthostatic intolerance I get for a few weeks in the beginning of the hot summer.

I don't understand the finer details of GRADE but if it's true that it allows demonstratably flawed science to pass as adequate, then it's flawed and should be retired.

Even if it doesn't come across as entirely honest, that they have to take this position shows I think how much ground the psychosomatic brigade have lost. Someone that is trying to treat unexplained illness with CBT in a systematic manner is 100% in the psychosomatic camp no matter what they...

What they are doing is reinforcing stigma rather than dismantling it. If they can't deal with this constructively then they shouldn't be advocates. The policy of avoiding any association with ME/CFS could plausibly harm the LC patients with ME/CFS-like illness and the ME/CFS community. It also...

The ME denying long covid advocates all seem to be from the UK. What is it with the UK and hatred towards ME? And after disrespecting ME patients, these people manage to feel like the victims too and complain about being unpopular. I haven't seen this behaviour in American or Italian or German...

I would lik to try a vagus nerve stimulator. Nothing implanted, one of those ear clip ones, if they are any good.

I'm not sorry to say that if you're a LC advocate who intentionally avoids acknowledging similarities to ME/CFS then you're massively unkind and should leave advocacy to others. No you don't owe it to ME/CFS patients, but it also doesn't cost you anything. It's simply disease denial.

At the moment, a lot of different health problems are being lumped into ME/CFS. So much gatekeeping in ME/CFS seems to based on the assumption that there is reliable method of separating one subset from the others. The lumping is even more evident in LC (which to be fair, is intentionally...

Long covid patients might be motivated to deny the similarity because they're afraid that the association with ME/CFS could burden LC and prevent progress. I think they have an inaccurate view of how stigma and neglect works. LC is at very high risk of being stigmatized and neglected because...

I really don't understand the logic here. It's a bit like those people who seem to think that you can choose your reality. There is quite obviously a subset within LC that is very similar to ME/CFS and it doesn't help anyone to pretend otherwise. Some people think there is something to be...

It's the POTS. I also often feel like I'm doing strenuous work when in reality I'm just sitting there. I'm not as severely ill so I don't have to lie in bed much during the day. Low blood volume or blood pooling or similar things could create conditions in the body where the heart has to work...

Let's hope Chalder doesn't read the forum or she will very soon find this disorder is real, as proven by responses to questionnaires after CBT, and obviously best treated with CBT. And the best part is almost the entire population needs treatment. A real goldmine.

When I moved out of a dirty city into a beautiful town with many trees and gardens, my physical activity increased without having to force myself. Instead of the usual psychological view of the individual being the problem and somehow, 80% of the population being lazy, the low levels of...

I have no doubt that Ron's team is doing the best they can.

It's not a contradiction if he wants to test it against a sample of patients with the same illness, instead of a sample of patients with random illnesses.

Mitochondrial complex V is also called ATP synthase. A decline in its function seems like it would be a big deal (especially if this affects all cells). It's not the only source of energy in the body but it's a big one.

My interpretation is: in a previous study, their main finding was a mitochondrial complex V inefficiency, in cells that had been immortalized. Immortalization of cells is an invasive technique and they need to be sure that this complex V inefficiency is due to ME/CFS and not the immortalization...

I can see how it could easily happen in various ways, but it's a bit complicated to explain and some speculation is involved. It has a lot to do with systematic bias and nonuniformity of the illness. The idea is that covid-19 is expressed differently in every person, depending on factors such...

RT-PCR tests have varying reliability. For example their sensitivity depends on time passed since infection onset. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7240870/ It's also possible that the tests are especially unreliable for long covid patients because their expression of the illness...