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They claim to be a non profit too. All the research that is being presented is publicly funded as well because Pharma companies aren't even involved.

In the past live tweeting and blog reviews afterwards on the various presentations have been allowed. I don't really understand why its changed for this particular one.

It might now as well, it might show a clear genetic difference underpinning Long Covid derived ME verses unknown origin ME. We could do with a lot more studied and the groups of various things like those that suffered from EBV looked at and compared to Covid origin and various other types. There...

Having looked at the patient questions I am not even really sure what the purpose here is. Some of it could be useful like food intolerances leading up to the need for tube feeding but a lot of this is just obvious, of course people were being tube fed because they weren't getting enough...

My primary experience with the PPI's I have been involved in is we didn't get to do anything important, they kept us largely out of the way. We got to choose between logos but not the actual text of the way the study was presented, we couldn't comment on the method of the study or the questions...

I feel a bit gaslit by this article. The researchers in the Long Covid space absolutely were saying that all patients had viral persistence and set these trials up in response. Not just these there were lots of trials setup across Europe as well on Paxlovid and a variety of other antivirals...

More than actually get tube fed anyway given the number of deaths from starvation. I dislike this framing a lot, it presumes the only people who can participate are those that got tube feed not those that needed it, some of which have survived or are currently surviving without sufficient...

Realistically its just PS, they do nothing about the biological aspect. Its just Pyschosocial and it would be a more honest take on what they are doing.

Its a blessing and a curse. Its a ward against the "self diagnosis" accusations but since its not actually been done on the basis of CCC/International it wasn't sufficient anyway for inclusion, just purely there for the purpose of that one accusation. Its cost however is not making the original...

Their entire incomes depends on them not ever actually getting it.

I feel I need to know more of the details of what is measured and how and what else it could be measuring. Is this a proxy of some description or does this PET scan genuinely detect currently activated microglia cells? Secondly is there another explanation for microglia cells being activated in...

Still staggers me that the response to Long Covid was we got a bunch of useless studies like this and almost nothing of value at all.

Not that I have seen. Carefully timed to hit summer recess to destroy any response to it.

Nothing has changed and sadly someone died as a result and now to add more insult onto the grieving parent a further gross miscarriage of justice will now occur due to yet more medical ignorance. The charities try to intervene in all these cases but they are never successful, because there is no...

I find this a bit concerning because I see it as another way to triage us out of the healthcare system and avoid us getting access to specialists for our various problems. A local team with one person having training in module 1 isn't exactly going to solve our problems with healthcare. This all...

I lost the ability to eat for quite a while, then I was on a liquid diet and protein shakes for many months, in all I would say I fasted for about 9 months after I caught Covid and was made very severe, I lost about 30KG. Then I ended up on an extremely restricted FODMAP diet as I responded very...

The potential for the local healthcare provision, which is mostly likely going to be a nurse having done module 1, that has the potential to reduce access to doctors and specialists, it triages us out of the system without fixing anything. Balancing that off against the small progress on...

There are zero tools for stopping the abuse of ME/CFS patients in the NHS. There is no oversight system that can swoop in and change how they are being cared for, the consultant in charge can completely ignore any experts that might be sent to help the patient, as we saw with Maeve's case they...

The problem we are trying to solve at a local level with GPs and hospitals is that ME/CFS patients are denied care. They are denied feeding tubes when they need them, they are denied blood tests and various drugs to treat their symptoms. They are gaslit and denied an official diagnosis for...

I can't even get my GP to write down my symptoms let alone code them correctly. The digital records are a gross underestimate because I know my records would never be caught by any of them and I am not unique in this level of patient gaslighting and dismissal.