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Charles Shepherd replied to an email I sent, saying that they are taking allegations against Professor Findley seriously, discussing the allegations with him and the MEA is to release a statement tomorrow.

The ME Association have a library of photos sent in by PwME to address the misrepresentation in articles on ME. Some people have sent in two photos, one of the private experience of living with ME that the public does not see and one of how they look when out in public. It shows the difference...

Since so few people are aware of this, those who do opt out are going to be noticeable. I intend to opt out but am concerned that my GP will think that it means that I am anti-science, in line with the way PwME have been portrayed. I barely know him but his attitude is difficult enough to take...

Why is Paul Garner given so much media coverage but there is nothing in the mainstream media on Nina Muirhead? I really don’t understand.

Like you, I was disappointed. In trying to take part in the interactive aspect of the lecture, I missed a lot of what was said, so have since watched it again. It has been edited and the word ME is not spoken at all now. The word cloud created by over 1,400 viewers, 83% of whom either have Long...

It is difficult to know what the tone is likely to be. Brian Cox, as a physicist, is not an expert on medical matters. Adam Rutherford is a geneticist and presenter of BBC Radio 4’s “Inside Science”. Both he and Nisreen Alwan have experienced long covid but their knowledge of ME will be limited...

This looks interesting. Brian Cox will lead a long covid discussion. I do hope that if they refer to ME, they have a good understanding of it - by no means guaranteed. https://royalsociety.org/science-events-and-lectures/2021/04/long-covid/

NICE are calling it ME/CFS. Maybe the NHS will change their wording once the new guidelines are published.

There are points to take issue with in this e.g. that CFS/ME (not ME/CFS?) is a diagnosis of exclusion. Also, the idea of the relevance of transition points in life - seek and you would find them in any life, especially in the age groups most likely to fall ill with ME. n=5 lived experience...

Every day I wake up in a body that loves activity, interacting with others, play, fun, work and thinking clearly and deeply. Each day, for decades, I am surprised at how little of that is possible before my batteries run down.

Has Trisha Greenhalgh failed to notice that she has put her name to a paper that supports much of what PwME have experienced? The medics who participated expressed how helpful social media groups have been to them; PwME have been told in the past to avoid such contacts. Participants spoke of...

If 1 in 10 of those who had Covid 19 have gone on to have Long Covid, and 12% of the population have had Covid 19, then that suggests an LC prevalence of 1.2% of the population? This is far higher than the c 0.1% prevalence for ME which Luis Nacul proposed, the lowest figure I have seen and the...

March for Change yesterday had a Zoom discussion on Long Covid. The contributors were Layla Moran who chairs the APPG on Coronavirus, Danny Altmann a Professor of Immunology, Dr Nasreen Alwan, an Associate Professor in Public Health for Medicine at Southampton University and who has LC. Also, Dr...

My concern is also about a possible abnormal immune response to the vaccine. It appears that there are two different types of vaccine. Which is less likely to provoke an abnormal immune reaction? Would the Oxford first half dose be the safest way to go?

Here is the link to Professor Sir Stephen Holgate’s lecture on COVID19. Definitely worth a watch. The current ME Association poll is on the flu vaccine, who has it and the aftereffects on people with ME. It looks like there is a 50/50 chance of either no ill effects or a deterioration in ME...

Hello MEMarge. Yes, I was at Southampton Uni as a mature student from 1985 to 1988. I wonder if we overlapped?

Professor Holgate spoke briefly tonight in the Southampton University Distinguished Lecture about the similarities between long COVID and ME/CFS. In answer to the question that you put, Trish, Stephen Holgate said that the ME community is a neglected one, with the existence of the illness...

It seems that Science4ME members can apply for tickets, should you wish to: https://www.eventbrite.co.uk/e/professor-stephen-holgate-distinguished-lecture-tickets-120496495261 Trish, I have emailed the question that you suggested to the event organisers and their response was to send the link.

My understanding is the SW was knighted for being eminent, also for retiring and making way for someone else to try to do a better job. Good of him. :whistle:

It was announced today that Professor Holgate is to be Sir Professor Holgate for service to the country in addressing COVID19. I look forward to the day when someone will be knighted for services to PwME. :trophy@:)