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@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

The article gives a huge list of symptoms for MCAS, and a prevalence of 17%. I assume this means they are calling all common allergies and sensitivities 'MCAS'. I looked at the treatment section, which starts with drugs such as antihistamines and goes on to include some less commonly used drugs...

https://www.mdpi.com/2075-4426/13/11/1562 Abstract Mast cell activation syndrome (MCAS) is an immune disease with an estimated prevalence of 17%. Mast cell chemical mediators lead to heterogeneous multisystemic inflammatory and allergic manifestations. This syndrome is associated with various...

The editorial group is international.

I can see the point of cardiologists assessing people for POTS asking about symptoms, and doctors generally learning to recognise symptom patterns that may be caused by POTS, so symptom questionnaires may be useful. I'm not sure what this has to do with health psychology. The use of...

The authors are all from the Health Psychology department at Kings, except for one consultant cardiologist.

I looked at their website: https://johnsnowproject.org/about/ They are promoting use of vaccination, ventilation, air filtration, high quality masks etc.

That looks like very good news, provided of course, if they decide to replace it, that the replacement is better. Many thanks to Charles Shepherd.

Having read Jessica's first book, it's so heartwarming to hear that she is no longer in the dire state she was then. I hope her improved health continues.

Report from a hospital in Spain. Given that the patients had already been diagnosed elsewhere, why were they sent to the "Exercise Physiology Department at our hospital, a dedicated referral unit for CFS"? Presumably for treatment of some sort, GET perhaps. If so, I wonder whether they did the...

I read some of the guide. At first I thought it was pretty good on management of severe and very severe ME/CFS because it includes some of the stuff from the NICE guidelines about needing low sensory and accesible care, side rooms in hospitals, and some needing feeding help including tube...

I can't see any point to CBT for menopausal symptoms any more than for ME/CFS. Sure, if someone is finding her life difficult to cope with, some supportive counselling from someone who understands what she's experiencing, along with things like work adjustments may be helpful. But why CBT? Women...