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In my family those I'm aware of are possibly my father, definitely myself and my daughter, and now my niece (sister's daughter) has long covid. [I say possibly about my father because he had what was described as a recurring virus by our GP, that started in the 1930's when he was in his 20's...

Some posts have been moved to: The LIFT trial (OMF) - Pyridostigmine (mestinon) and Low Dose Naltrexone (LDN)

Thank you for sharing your experience, @chillier. I'm sorry to hear you were harmed. I think they need to be told about this. They need to understand the harm they are causing with this approach.

No, I have written about the Dorset service as I experienced it over 10 years ago. https://www.s4me.info/threads/uk-dorset-me-cfs-clinics.32157/ Edit: Replies moved to the Dorset thread

It looks like a service run by occupational therapists. I don't understand the section on a private service. Does this mean it's run separately from the main NHS service and people have to pay, or that it's NHS work outsourced to a private company. I'm very suspicious of a service that groups...

Thanks @DMissa for explaining the background to the research. It's really helpful to see it in context. I'm sure it's frustrating for authors for their work to be paywalled, though I guess people working in universities don't notice the problem so much as their universities pay for access to...

:hug:

Given that there may be a change of government before that, I would not make any assumptions about what happens in 2025

From reading the abstract it looks like the usual unblinded, no control group, subjective outcome measures nonsense. And the abstract doesn't say what the intervention involves. So it tells us nothing. Also the entry criteria was at least 12 weeks symptoms, so most would probably have recovered...

For Queensland government's statement on Long Covid, see this thread: Australia: "Long COVID" Living evidence summary

Please keep this thread for information about Maeve's inquest. We have an In Memory thread for Maeve here: Maeve O'Neill For general discussion of the topic please go to this thread: A discussion about feeding issues in the severely ill.

You make my point well, @rvallee. The thought experiment using a drug fails because the absurd situation we find ourselves in with GET would not happen in the same way with a drug treatment. If it were a drug, it would surely be taken off the market if it showed so little efficacy and there were...

The article on the Visible website linked in the above Tweet: Introducing: David Putrino’s Research Study more at link.

Bear with me on this, I've only just invented this thought experiment, so it's quite likely to go pear shaped. A new drug is invented to treat ME/CFS. The people who invented it are sure it will work, and they have a biological rationale for the drug which they are proud of and have written...

Oh dear, that risks to recovery section is dreadful. All the patient blaming nonsense.

My concern in the UK is that none of the charities have the resources to inspect all the clinics, though Charles Shepherd is doing a great job writing to them about their published material being out of date and wrong. I suspect we'd end up with BACME as a self appointed accrediting body, and we...

I think their biggest failure of process is not really listening to patients actual experiences and relying on questionnaires at the end of a short course of 'therapy' to assess the effectiveness of their service. People are naturally grateful to have a treatment, and often don't realise until...

From the patient information sheet, it's a psychology study digging for pre-FND psychological factors and life events, presumably in order to attibute FND symptoms to these psychosocial factors. Given that it's a self selecting online sampling method for a PhD, no doubt it will be analysed in...

She claims she's working now as a naturopath not a doctor, but that should mean she can't prescribe any drugs, which it seems like she is still doing.

Ta, I've probably asked you three times already. Brain so full it's overflowing.