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Given that some people with Long Covid are improving following the vaccination injection and others are not, are we seeing a similar pattern of variation between individuals to that we see in ME?

A clear and concise overview that should be widely shared.

My ME onset was initially associated with the EBV virus, but after a number of years was in apparent remission. However a major relapse was associated with a bad dose of influenza over the millennium New Year, which with some fluctuations has left me moderately to severely effected since. I...

If some thing does not work, how can it be cost effective? Give there is some evidence that UK specialist ME/CFS services primarily providing CBT/GET result in people working fewer hours and claiming more state benefits is this ‘research’ completely barking up the wrong tree.

It has always puzzled me that I am not more unfit than I am, that I have not lost more muscle mass or put on more weight. In the first twenty years or so of my ME when I still had periods of relative remission, if I was well enough to do things, I could do things approaching my premorbid level...

Apologies, I had misread information from the MEA and it was only one Welsh Health Board so far that supports automatic inclusion of ME in the at risk Group 6 see https://meassociation.org.uk/2021/02/vaccine-priority-list-latest-on-our-actions-in-england-wales-and-scotland/#Wales

Feeding/eating problems is such a potentially stressful issue for parents. Feeding your child is part of your identity as a parent. When I worked with swallowing issues with adults with cerebral palsy, it was obviously necessary to work closely with parents/carers but at times you needed to...

Although I can see the rational for trying this, it is highly possible that PEM could be triggered by such electrical stimulation. So people with this symptom could end up with their condition being worsened by such intervention.

Sorry, something of a red herring. We have been having gloriously sunny weather here the last few days and yesterday I went out for the first time in six months to get the first injection of the AstraZenica (Oxford) vaccine, it was sheer joy and I began to realise (if we don’t make a big mess...

Here in rural Derbyshire and in North Staffordshire provision has been made through local GP practices for people unable to attend the centres to be vaccinated at home. This is being organised at a very local level by GPs not the large NHS directly run regional centres. So @alktipping it might...

In England it seems to vary from GP to GP as to whether people with ME/CFS are classified in Group 6 or not. Group 6 includes those with long term health issues many of which are specifically named. Group 6 is prioritised after people aged over 70 and before those age over 65? The guidelines do...

This is called prospagnosia and has most commonly been reported in the neuropsychology literature in relation to acquired brain injury such as stroke or head injury. It has been generally assumed that there is a specific part of the visual cortex that processed human faces. When I was a student...

I do have problems locating and accessing stored information in an IT system. For example I really struggle to navigate this forum once what I am looking for is no longer near the top of the most recent lists. This however is a more recent issue, only associated with my recent relapse over the...

One thing I experience, that I have not come across anyone else mentioning, is episodes of ‘jamais vu’, that is when on a familiar route I unpredictably loose any idea of where I am and how to get to where I want to go. I fail to recognise places or landmarks that I normally know very well...

A slight red herring, but it should be noted that reduced hours might impact on any pension if you are later forced to take ill health retirement. In the 1990s my work agreed to me working half time, following several meetings with occupational health consultants. I was working for the UK NHS...

An important contribution, I hope it gets widely read

Conclusion, don’t get long covid in France.

Poor children and young people

Copied from this thread The British ME Association are requesting people to send them accounts of their experiences of health and social care as part of a planned campaign looking at good practice and the new NICE guidelines to roll out in ME Awareness Week in May and beyond. See...

When I was milder I was able to go on reasonable walks (a few miles) regularly but invariably I would end up pushing myself further and triggering relapses. However a number of local ME groups run apparently successful swimming groups or yoga groups. Off the top of my head I can just remember...