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I think the core issue comes back to the fact that people listen to what the professionals (doctors) have to say and form their opinion based on that. 99% of them still think these illnesses are fake, psychosomatic, etc so that's what the public will think. You might have some echo chamber on...

What a joke. Would she dare express these kind of views on an illness like cancer? Of course not. She would be figuratively nuked off the face of the earth if she did that. But because its CFS and POTS, you know, those fake "SJW illnesses" where the patients complain and antagonize the...

It's not just ME/CFS. The Hamilton scale for example is widely used for depression and it's utterly disgusting. You can very easily have any chronic illness and be diagnosed with depression on that basis because loss of functioning or any symptom really = depression/somatization according to...

Steroids and IVIG? Meh. So many people with ME tried those (me included) with no benefit. I guess maybe you could make the argument that perhaps if administered early into the illness they could have an effect on a subgroup of patients? Either way seems like a stab in the dark. For me one of...

The only patient tailored intervention is whatever strategy the doctor is gonna use to gaslight you this time

The problem with this is that Ron Davis has been touting for the last 6 years that they want to fast track research and find, and i quote from back in 2018, "hopefully a cure within months". This has allowed them to raise more than 30 million dollars from patients. I get it that it's a pilot...

For a variety of reasons (mainly stigma) researchers with talent do not want to go anywhere near ME/CFS. Throwing money at the problem won't do much, unless you set up an in house study (like the NIH is doing) and sort of "pressure" people to work on it and set up very high standards. But that...

Regardless of how it may help certain individual patients to think help is never coming, i don't think such articles have any right to exist, as long as severe patients with the same illness (at least as far as medicine is concerned) are spending their life rotting in bed.

Highly disagree. You don't make history by being submissive and saying thank you to the people who have been screwing you over for decades. NIH might have their reasons for not funding Ron Davis, and those reasons may be legitimate. But he is just one researcher. The reason why 99% of...

If this is the big breakthrough, why only 12 patients? Why not confirm it on all the patients enrolled?

Sorry, wrong wording - I meant to say that nobody outside of the small ME field would look at this and think it's worth trying to replicate. Luckily this time Lucinda Bateman is here to bail us out, but wouldn't it be better if we had small but properly executed studies of 20-30 patients that...

Dr. Kaufman is considered the Mecca for many ME/CFS patients, he has a certain reputation. A few years ago Ron Davis said that every time he talked to Dr. Kaufman he "was impressed by how much he knows". I have seen patients sell their house or car to see him in a last ditch effort, as he is...

I have a chronic HHV7 infection detectable in the blood. I have measured it with real time PCR 8 times over the span of two years (in different labs) and the result is always the same: around 2000-3000 copies per ml (90 copies/ml is the threshold for positivity, below 90 it's considered not...

I have this too sometimes. I don't have any evidence but my feeling tells me it might be related to hypometabolism.

The hypothesis was always credible. We have known for a very long time that pathogens can persist inside the body and there are probably hundreds of ways they can interact with cells that we still don't know about. Given that we know pathogens can cause trouble it's not absurd to think one of...

The problem is that if doctors and researchers think ME/LC is a fake illness (which is the case for at least 90% of doctors) they're just gonna pocket the money and stall for as long as they can. Money does not solve every problem, if people aren't motivated or don't believe in what they are...

The whole point of the treatment is the deceit and the patient is not to be taken seriously. I've seen doctors with published papers where they literally say there is no effective treatment for X and then when the patient (me) is in front of them they say yes psychotherapy cures everyone. Full...

There is this old blog post in which it was shown that a change in the dielectric properties of the cells in the sample might explain the increase in the real component of impedance we see in samples from patients (see paragraph 6)...

I think getting a science communicator wouldn't achieve much of anything. The problem is that Ron Davis simply cannot get anything done. Every single project he is involved in has been on halt for the last 4 years and every time he comes out with a different excuse. They clearly have the...

Agreed. It is absolutely ridiculous. They have been talking the last 5 years about making a more efficient nanoneedle instrument and every time they have an excuse. First it was funding, now it's tenure. Just use the machine you already have if you cannot make a better one for goodness sake! So...