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I am very upset, much more so after seeing their response. Is this really necessary? To retraumatize people to what end? I do not think this is justified and consider it quite likely that some people do not know quite how bad all of this is. Perhaps this is naive.

The ME Association are doubling down in their Facebook comments. Repellant I'm afraid. Edit: they are responding to people who have been harmed with a text of patient testimonials etc. It is horrible behaviour for a charity that is supposed to represent the interests of patients who have been...

It was GET and stealth LP, which he was vague about and called something else, dangling it in the future as something promising. He said he had a colleague who was doing this, and it felt like a scam, whatever it was. Felt like he brought in clients for someone else sometimes. He would berate...

The letter states that either she needs to go to psychiatric care or my "fatigue bed" service, on very little basis. I don't see how anyone can read that letter and think that this person has an appropriate way of dealing with matters in general, let alone in the context of ME, or in the case of...

Letter written by Findley on Sophia Mirza case during the sequence of events which led to her being sectioned, from the following document archive maintained on the website: http://www.sophiaandme.org.uk/documents%20index.html Here is the letter...

From ME Association post on Severe ME week 2020 about Sophia Mirza's story: https://meassociation.org.uk/2020/08/severe-me-week-2020-sophias-story/ Edit for clarity - Sophia Mirza's mother is quoted: "In 2001, Dr.Firth approached Professor Findley at Oldchurch Hospital in Romford, telling me...

I am actually shocked :( This is a very bad idea. I have seen him as a patient several times, including some appointments many years apart. I have an extremely unfavourable opinion. Among many issues I did not find matters to be handled in an honest, practical, or appropriate way. We were very...

I am unclear about whether this practice is even allowed? I am a bit confused. Someone tried to sell this to me once. I never went back for this and other much worse reasons.

I was very disturbed to see this @Action for M.E. This is extremely serious. What happened?

Does anyone have a handle on what is going on re: Collins? I was not sure what to make of this.

Thank-you for the information, @Wyva - I would imagine he may have been concerned to be saying this in public? I am worried about it all.

Same experience. I agree.

Bothered in what sense? This question concerned me. As in, it upset them emotionally? Or limited their functioning? Why bother asking this question and highlighting it so much as the top line item? I frankly thought this study was a waste of money. What were they trying to establish or...

I saw this today. I was troubled by the way these results are presented. It's fine to present the data that most people appeared to report benefit and some people became worse. But you can see from the phrasing how desperate they are to ignore the latter experiences. It's unscientific.

Who reads this stuff and thinks, yeah, this guy seems pretty on the level?

I agree; this seemed more about sowing confusion than anything else, and to give people a vague background narrative base from which to ignore the issue

Why isn't it a form of EDS? I know dx cannot be genetically confirmed. What, if anything, is it?

Same. She has been doing stuff for years that means that she cannot be an effective spokeperson for us, not that she ever particularly was. The "take on the establishment" stuff never really helped her patients; I remember finding her outside activities impractical and frustrating as a patient...

Same it's really sad as I used to be one of her patients and she really helped me over a decade ago. It's quite terrifying to see, and every time I look it's worse. The stuff on the screenshots here is just so dire I don't know how one begins to get into those kinds of thoughts :sick::(