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Kennedy seems to see HIV as a sort of “manufactured” culprit for AIDS, apparently there is a broader movement behind this called “HIV denialism”. Kennedy thinks that research funding was then wrongfully nearly solely invested into HIV and therefore marginalising what he calls “non-HIV AIDS”...

Relevant extracts:

I’m skimming through Kennedy’s book right now, but he seems to use the neglect of ME as an argument for his hatred of Anthony Fauci. He seems to see ME as a biomedical illness, and says it’s chronically underfunded, but also spouts baseless claims about it being “HIV negative AIDS” and being...

A quote from RFK’s anti-fauci Book

Found a very interesting quote from someone’s book description: ““Neenyah Ostrom's reporting on the Chronic Fatigue Syndrome epidemic from 1988-1997 is getting increased attention thanks to Robert F. Kennedy Jr. He discusses her work extensively in his best seller, The Real Anthony Fauci” I...

That’s a shame, it seemed like advocacy was starting to influence her, and that long COVID was atleast “on her radar”.

The chronic disease stuff sounds promising until you realise he thinks most diseases are caused by environmental factors such as bad food and not enough exercise and random chemicals. (Don’t get me wrong some of them are but this generalisation would be very harmful to ME/LC patients)

Warning, the following is possibly negative, but I think it’s fully backed by the facts: I don’t have the exact numbers, but with 1.65 billion invested in Long COVID (most of which has been used up) the US government must have contributed over 50% possibly over 80% of all research funds ever...

Perhaps I shouldn’t have voted in this poll? As a very severe person the answer is obviously no. But maybe you aim to ask only mild people?

I don’t have the energy for that but if anyone has the motivation I think that it would be a worthwhile effort.

So if I understand this correctly, the intervention is basically to pretend your child is healthy and wish their illness goes away? In a way, abandoning your child and making them feel crazy for symptoms they can’t control. If denialism were a branch of medicine, it would be this FND/BPS/FSS stuff

Wow you weren’t kidding. The article summary would be hilarious if it were a joke. Thank god the politicians have come together and made a pamphlet. Now thanks to this pamphlet, the cases will start dropping again.

That makes sense. I didn’t know intervention could be used in a positive sense. I thought it meant like “your alcoholism has gone too far, we’re intervening to make you stop”. Or here “your false illness delusions have gone too far, we’re intervening to make you stop”.

Does this not breach human rights? And on children… Terrible. (I’m just going off the abstract I don’t have access to the article, but making the parents do an intervention to improve symptoms sounds pretty rough)

I assume they are based in the San Francisco Area? I wonder if we could get David Tuller or maybe the Dafoe/Davis family in touch with them? Because it seems like none of them really know anything about ME. Here’s their current staff: * https://silc.org/about-us/ It looks like none of them...

These are their clinical research parteners

I hope they get some ME people on board because they are sounding a little behind.

If this is a poll type think my experience is no. But sometimes I have one eye get sore or one ear feel blocked and it comes and goes with PEM. But that’s different to the “sensitivity”, or as I think of it, low PEM-threshold related to sensory inputs.

Sorry this isn’t very detailed but saw this on bluesky and thought worth sharing. https://bsky.app/profile/danielmissailidis.bsky.social/post/3l75vt5uhg62h Should I share in the Australia thread too/instead?

I finally had the energy to read it. It was a fun, and thought provoking read. I really enjoyed it thanks @Jonathan Edwards. My non-professional opinion is that there still is value in a stricter diagnosis criteria that does not rely on “fatigue”, which is what the ICC seemed to be trying to...