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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all the clinics, though Charles Shepherd is doing a great job writing to them about their published material being out of date and wrong.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.

@Andy please can you clarify whether spit kits have to be posted by 31st January, or received at their destination address by that date. The tweet in the post above says they have to be received by that date, but also says 'return by' which is, to me, ambiguous.

I agree it's a poor response, and a very odd one. Apart from mentioning fluctuating conditions, it makes no explanation of why most pwME are not able to work even if it's home based and flexible. I think at the very least they should have made it clear that pwME are not just 'disabled' we are...

Second highest on the list is the main PACE trial paper. The trouble with this sort of listing is it doesn't distinguish between research that is cited often because it's valuable, and infamous trials like PACE cited for being problematc as well as to prop up other equally bad research.

I occasionally use MEPedia to look up bits of historical information and references listed. I would never use MEPedia to find out current medical information, as so much of it is very poor quality. My preference would be for MEPedia to stick to what it does well, which is provide a handy source...

“For me, long COVID was life destroying” – Eric, a vicar from the UK, on how rehabilitation services gave him hope The article continues with his description of the Oxford Long Covid clinic that he praises for emotional support and teaching him pacing. He also did the online opera company...

I remember watching a video of a doctor demonstrating nasal irrigation with salt water. He warned against using tap water, as he said at least 2 people had died from infection carried by the water spreading into the brain. He strongly recommended buying ready prepared nasal wash in sterile...

I think they should pay travel costs and other costs involved in taking part, and if it involves significant time commitment and it's a well funded study it seems reasonable for people to have some payment for their time. Also if the person needs to be accompanied by a carer there should be...

Some posts have been moved to News from Cochrane Please try to keep posts relevant to the thread topic.

Some posts have been moved to UK: Cheshire, Merseyside, Knowsley ME/CFS services