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Well said @Michelle

Is the use of the word ‘absenteeism’ in this context an American convention. To me it sounds enormously judgemental. I remember back the years I was struggling to keep my job and my career: the real effort, hard work and psychological distress trying avoid taking sick leave, then the costs of...

Each time I see it, even though I now know what it is, I still read Tonix as ‘toxic’ and have to take a second glance.

Also this means that any subsequent medical management of children with ME/CFS is likely to be based on misinformation and at its worst could result in misdiagnosis or harmful interventions for other conditions as well as for the ME/CFS. This attempt at getting children to misrepresent their...

Sorry have not read the full article, but surely it is equally possible to create a narrative where the right vices could make life with ME substantially easier. A close relative had Parkinson’s. She was an archetype from a Victorian novel, an indolent selfish lady who from her arm chair...

I didn’t see the NHS information and also got round to do something about it until I was 66, some 18 months ago, when I asked my GP practice for the vaccine but was told I was was not eligible. Then somewhat surprisingly two months later I was invited by my GP to have the vaccine. All very...

Just read through the survey form, and, though it was not as bad as I expected, it is very long for someone with very severe ME/CFS, and several questions intended to cover all options leave gaps that mean some people will it find difficult to answer them. As @Trish pointed out there seems to...

I am not sure I have confidence in a survey undertaken by BACME.

Presumably this could also related to the suggestion that people with ME/CFS are at higher risk of developing cancer than the general population, though how reliable the studies are that suggest this is perhaps a matter requiring further discussion.

Thank you @Maat for sharing your experience.

I guess from the point of view of creating a useful studentships a host institution and an appropriate supervisor would need to be identified. Presumably in relation to the DecodeME data it would make sense such a grant being attached to Prof Ponting’s department. However I think any thing that...

Thank you @Maat for collating the information on FII (fabricated or induced illness), I had not realised how much of a mess the information and official guidelines are. When you have a health service that on the ground refuses to believe very severe ME/CFS could possibly exist along side such...

Well certainly most of us have had experience of ‘the Pit’. If only we could unilaterally call ‘Nanan’s Hat’ (sorry an allusion to a word game my goddaughter invented when she was two that is similar to Mornington Crescent which was won when she loudly said ‘Nanan’s Hat’). At present it still...

I have known people that have the basic assumption that they are always right, so if something they previously said is shown to be wrong, that is a logical impossibility and the person reporting it must be deliberately lying, certainly they never said, wrote or intended that. It is possible...

:thumbsup:

Even the GP practices seem to have trouble understanding this. When I was sixty six I asked for shingles vaccine as I had had my 65th birthday after the specified date and was told I was not eligible. However two months later I was invited by my GP to come in for the vaccination. I have been...

This is not a recent decision but current ongoing policy. I have been wondering as someone aged 67 whether on not I should be seeking out a private booster from the start of this year at least. I recognise that I am probably not more at risk of catching Covid 19 than anyone else my age, indeed...

That is perfectly reasonable, my comment was not intended as criticism, rather just to let you know why any response to your very relevant request might be slow in coming. Do say if you have any specific deadlines to meet.

An interesting question, hopefully @Jonathan Edwards will pick up on this when he is back ashore.

It may take a couple of days to get us to focus on your very valuable exercise, given how taken up we are with the DecodeME preprint release still less than twelve hours ago.