BBC Radio Bristol, John Darvall, 16 min segment on ME and #millionsmissing

The segment starts at 2 hours 11 minutes with a brief description of the symptoms of ME.

A chat with Philip Murray, @phil_in_bristol,
one of the organisers of this year's #millionsmissing in Bristol. He describes how he became ill 20 years ago, and how it took six months before he could stand for 30 minutes again after a sudden, post-viral, onset. Was advised well by his GP, to rest, but still relapsed and was ill for 6 or 7 years in total. Considers himself fully recovered now.

ME mostly affects women. No cure, no treatment. PACE largely discredited. 20 times the funding for MS per patient as for ME in the UK.

Talks about the #millionsmissing campaign in Bristol and globally. A friend of Murray's, Sue, died from ME after being tube fed at the end. She is part of the reason he is involved now. Explains what the shoes represent. Millions missing from their lives, but also millions missing from research funding.

ME described as relapsing on the way to recovery for some.

ME is a bit like cancer in that there are gradations and sub-groups, a complex illness.

https://www.bbc.co.uk/programmes/p063cnb9

 

Sounds good. Thanks for the link and the summary.

 

Where is that funding figure from. ?

What is the #MM campaign Bristol, or anywhere in uk asking for this year? In America there were clear demands everyone was making across the board. In uk it seems to have been more awareness raising but I don't think it's actually achieved anything to day, probably a controversial statement.

 

The radio interview was Good but I personally don't see the point of awareness raising (again ) if the people who make a difference in our lives, the NHS, the royal college and medical schools and the funding bodies are unaffected and not put upon to change. John actually said at the end it's not a demonstration with placards, just rows of shoes, well what did last years rows of shoes change? . We need to get like the aids campaigners and act up and make clear demands of specific bodies which the press can connect with - just saying loads are affected, we need more money from somewhere in a peaceful polite way year on year doesn't get change.

 

Would be good if when highlighting lack of investment in research they raise the issue of where the little money available is going.........

ie in Bristol on quack therapies (LP) and 'Shopping bag' studies.

Meanwhile AfME (also based in Bristol) are doing their thing in Geneva.......

 

I suspect the Bristol shopping study is low cost and funded by the uni psychological department along with many other useless studies across different things, something their academics do in their research capacity. That to me isn't our problem in the way MRC NIHR pumping huge funds into behavioural studies have been. It's gone quite quiet since the CMRC announcement, how many more years before we have a structured and properly financially fuelled/incentivising ME research program in UK?

Regarding AFME we should be getting our own house in order first or as well AFAIC. The WHO neurological classification made little difference to how our own country and other European countries failed the illness. AFME aren't doing any campaigning on anything uk, the path is the CMRC one only.

 

Ok so the shopping bag study may be low cost but still a typical example of the rubbish they are 'researching'; what about £1m on FITNET? Not to mention MAGENTA etc etc........my point is this is happening on their doorstep.

 

Sure, I'd forgotten those two ongoing studies too. I just meant the issue is as much what isn't being done as what is.

 

Action for ME are also doing this ME awareness week

https://www.actionforme.org.uk/news/invite-your-msp-to-scottish-parliament-event/

"Gail Ross MSP is hosting an event in the Scottish Parliament during M.E. Awareness Week, celebrating the patients and professionals working to improve the lives of those living with M.E. in Scotland, with the support of Action for M.E.

Are you able to ask your MSPs to attend, so they can find out more about M.E. and how it affects you and others living with the condition in Scotland?"



A party at Scottish parliament to celebrate the work of people AFME are working with up there ... hmm.

 

Not a million miles away plus :
Esther Crawley "She set up and leads the Bath specialist CFS/ME service for children based at the Royal United Hospital in Bath."