United Kingdom: ME Association news

https://twitter.com/user/status/1412741991570546692

 

Announcing The Howes Goudsmit Prize for Severe ME Research

"The ME Association is pleased to announce the establishment of the Howes Goudsmit Prize for Severe ME research. This award has been created because of a very generous donation from Dr Ellen Goudsmit, a disabled scientist who helped to create awareness of ME in both the UK and the Netherlands and who has studied ME for over 40 years.

The prize, which will amount to £5,000 per year for the next ten years, has been named The Howes Goudsmit Prize after Mrs Sandra Howes and the late Mrs Felicie Goudsmit. Mrs Howes had Severe ME, was a board member of the ME Association, and spent years writing about the disease. Mrs Goudsmit was a carer and as such, became very familiar with the many challenges of dealing with severe disability."

https://meassociation.org.uk/2021/07/announcing-the-howes-goudsmit-prize-for-severe-me-research/

 

The Big Give Christmas Challenge – help us raise more funds for biomedical research

"The ME Association is looking out for some amazing supporters who are prepared to pledge a minimum of £100 to set up the matched funding pot for our Big Give Christmas Challenge.

This year we’re aiming high with another ‘Double Your Donation’ appeal.

We want to raise £50,000 to top up our Ramsay Research Fund, where fundraising fell away dramatically during the pandemic. Some ground-breaking research had to be put on hold because supporters couldn’t get out to take part in mass participation events.

We are now in the ‘pledging phase’ of the campaign when we ask people to help us build up the matched funding pot before the public appeal starts on at midday ‘Giving Tuesday’ (30th November).

The pledge will be for a minimum of £100 – or any multiples of that. Please pledge what you know you will be able to afford."

https://meassociation.org.uk/2021/0...-us-raise-more-funds-for-biomedical-research/

 

That would be my impression judging by the transcript of the interview.
PWME need advocates who understand the level of ignorance within the medical profession, not those who profess to know the answer.

 

Wow. I thought the ME association was one of the good ones? This is very disappointing, based on the interview transcript above. Would stop my support of the ME Association.

 

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 glad to get away from that place never to return.

"he is always excellent and entertaining company" https://meassociation.org.uk/2021/10/welcome-to-our-new-mea-patron-professor-leslie-findley/
As this is a public forum I will not repeat what this person has said to me or how they treated me.

Does anyone know what is happening here?

I am sorry for the comments; I am somewhat bewildered and would appreciate any context anyone has to offer. My understanding was that this person's practice was fairly harmful in various ways.

Edit: "I think the Lightning Process has a part to play in the management of some patients." As this is in the transcript - and this was a comparatively minor issue - I believe he tried to sell LP to me, although he didn't call it that. He was very slippery.

 

What on earth are they thinking?!

 

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, for legal protection of the G.P. and the surgery. Sophia asked me to research the clinic, which cost thousands of pounds. They told me, when I pressed them for long-term results, that patients usually revert to the point from whence they started. I spoke to a couple of ex-patients who were afraid to have their names used; they said that this clinic was run on the lines of mental health and used Graded Exercise, although it claimed to be a neurological clinic. They also said that when patients did not get better that they were given a different diagnosis before being sent home. Sophia elected not to go to the clinic.”...
“I was told that if Sophia refused to go to Oldchurch Hospital in Romford, or if she did not recover within the following 6 months, that she would be sectioned under the Mental Health Act..." "

Yep. This is the same person, right??

 

This is odd and disappointing. We know for a fact that playing nice with the ideologues gets us nowhere, this is a terrible decision.

 

Well that's a novel cop-out BPS strategy I've not encountered before! Our Cr@p treatment didn't work for your Condition X, which must mean you don't have Condition X. So we will re-diagnose you with Condition Y, just to make it clear we have washed our hands of you.

The Slopey Shoulders R Us school of medicine.

 

I am so grateful for the S4ME forum, a place where members actually have influence and sensible decisions are made by our committee representatives. This seems an appalling and irrational decision by the MEA, I would definitely not join them while this person is their patron.

 

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 index.html

Here is the letter.

http://www.sophiaandme.org.uk/docsindex/59+59a.jpg

Context: patient is ill for 5 years, deemed unusually long.
"Clearly Miss Mirza needs to be taken out of the environment she is in" (from his letter)

 

Shall I expect a certain Dame to be invited to the table and appointed patron next?

It would appear to make nearly as much sense.

 

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 a highly emotional (to some members of the community) patient death that the MEA have used in their own materials.

Re: my own experiences. They recommended in-patient care to me both times following my initial appointment. The first time I was mild (it seemed absurd that they were recommending this). The second time I was much more severe. It was just a standard thing they did it seemed. Same letter seeing if we would come. It cost thousands of pounds. They would not say what "treatment" would be received, if any. Just that it may be better to be taken out of one's environment. (££££) We did not do this, of course.

I have not seen Findley for some years, but certainly by around 2010ish he did not sound as though he had changed much. I tried to work with him although it was extremely difficult due to the nature of his practice and due to his own inappropriate and in some cases bullying comments. I was horrified to read this correspondence. What strikes me most with the benefit of hindsight is really the bullying and taking advantage of vulnerable patients, the dishonesty, and the way they would talk about people who did not get better.