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I think the Pulse article perfectly encapsulates the way that ME/CFS is perceived and framed by many doctors – that the primary problem is for the poor GPs who don’t know what to do with these inconvenient patients who block up their clinics, rather than the suffering of patients. That is why SW...

There are a couple of references to The Panther in this article about Oliver Sacks and the fabrications in his work: https://www.newyorker.com/magazine/2025/12/15/oliver-sacks-put-himself-into-his-case-studies-what-was-the-cost Archived copy: https://archive.is/jmb6s From the article: I...

Is there anyone on here who is in Sian Berry’s Brighton constituency who could contact her and maybe ask to meet her to explain the issues?

Playing devil’s advocate, they might argue that they were holding money back so that they would have enough in the bank to able to fund this type of study. Regardless, I’m pleased that MEA is funding this. I can’t remember how much they have hoarded but I’m hoping they might be able to...

Sorry to be repetitive but we can’t know if anybody has been cured by any treatment if it hasn’t been tested in appropriate trials. All we can say is that recovery has been reported following treatment – just as people have reported recovery following interventions such as GET and Rituximab...

And many of them are the same people who used to argue that GET doesn’t require fixed increments.

If there is a parallel with TB it is perhaps with the false inference of psychological causes before the real causes were understood. Susan Sontag wrote about this in Illness as Metaphor.

I’ve wittten to the producers of Poison Water.

Now on iplayer: https://www.bbc.co.uk/iplayer/episode/m002mshv/poison-water I’ve not watched it yet. I hope SW’s role is highlighted. Regardless, I wonder if it would be worth contacting the film makers to see if they might be interested in doing a film about what he’s been up to since. From...

But we don’t know if anyone has been helped. Without proper trials, all we can say is that some people have reported improvement following surgery – just as some people have report improvement following all sorts of other interventions, including some like GET and Rituximab which have been...

Yes, we’ve been here before with Rituximab. It’s good news if pilot studies seems promising, but we must be extremely cautious about getting hopes up before we have reliable data from a double-blind randomised controlled trial.

Yes. If I ever recover from my ME/CFS I might need some rehabilitation having spent more than 30 years either in bed or in a wheelchair. Sometimes that hope is all that keeps me going but unless there is a significant improvement in my underlying condition, I can’t be rehabilitated – only helped...

Watched bits of the debate. Grateful to all the MPs who attended but also somewhat frustrated by some of the content. For example, Jeremy Hunt spoke about one of his constituents whose parents moved the whole family to the US in desperation so that their son who could get treatment. Thankfully...

Agree with all this. I’ve only read parts of this thread and none of the document so apologies if this is a repeat or not relevant but ideally we need specialist physicians with links to research institutions. Thanks to all who are helping with this. Sorry I don’t have the capacity to...

I agree. But god help us if it leads to a multimillion pound pacing-up trial. And it should be noted that there is strong evidence that experience – and particularly their experience – is very bad at knowing what works.

Dr Hyde died last year: https://www.s4me.info/threads/byron-hyde-md.41425/ There is another thread about Dr Hyde here: https://www.s4me.info/threads/dr-byron-hyde-canada.10892/

A few years ago (maybe 3) I asked my (very helpful) GP to change my diagnosis on my notes from CFS to ME/CFS. She agreed but then told me that the system would only allow her to enter ME or CFS, so I asked her to change it to ME. From what Jo says above, I wonder if that was a mistake but I...

I’m just flagging this question in case you missed it @Jonathan Edwards

If children are being taken into care and people are being denied lifesaving interventions due to biobabble which originates with private doctors, why is the GMC not taking action against those doctors?

For 30+ years the MRC has told us that the lack of high-quality research proposals is the reason it hasn’t funded more biomedical ME/CFS research. I think this confirms that that is not true. There may have been a lack of high-quality applications but the problems clearly run deeper than that.