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Apart from the position that it's real but they don't want to help us because its too expensive/politically inconvenient. Which is probably not what most of them actually believe but thats the message their actions send out.

Yeah this is probably it. But their public position suggests a torturous mental contortionism on the part of funders. Even if they think its psychosomatic, surely it doesnt matter what drugs are researched because none of them will ever work better than placebo! So there is no need to make this...

Which is really disturbing because it means that they realise that MECFS is not psychosomatic - because otherwise none of the possible treatments would work - but still stigmatise us and do not want to help us. I can't help but think something odd has gone on behind the scenes here.

The unsaid thing in all this - we are not as deserving as those with 'proper' diseases Also I wonder if there was any ranty person esque lobbing here. It's such a bizarre decision by any logical measure but very typical of MECFS neglect.

The example Den Dunnen gave was daratumumab

It's absolutely outrageous but perhaps useful as an example of just how illogical the neglect of MECFS is.

Indeed.

Brilliant title.

'Significant'

I share your skepticism on the therapy but I assume it means they have unblinded and are writing/have written the paper? Or am I missing something?

Ah, that makes sense! Thanks for clearing that up

I don't think thats the one, the company of this device is called Fareon. Thanks though!

Anyone got any info about the trial discussed in this thread? Putrino is reporting improved cognition for LC patients in a triple blind trial of a new magnetic device that targets neuroinflammation.

Really hoping that turns up something interesting.

My prodromal onset coincided with massively worsened hangovers, to the point that I couldn't function much at all the next day, and sometimes the day after. The way my body responded to alcohol seemed to change. Unfortunately it also made me feel much better while I was drunk so I ended up...

I was diagnosed with SIBO last year. For complex reasons inc. the specialist who diagnosed me pushing loads of alt med treatments on me and the GPs refusing to prescribe the correct antibiotic I have not started treatment yet. My GI symptoms are bad. I will spare you all the details! How solid...

I have come to the conclusion that it's literally all bullshit. All of it. As in: there is no such thing as a psychosomatic illness. After the destruction they've caused, all the obfuscation, all the fudged and fraudulent data, I really can't see any good reason to think there are any illnesses...

If this is true I would be very happy as I have been absolutely plagued by GI symptoms since my suspected covid infection

Bold claim