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It was a mixed bag. They didn't even try to answer the question they posed. Julia Newton in turns frustrating and then useful. I don't think any acute onset viral type patients mentioned Only 1 patient call starting speaking about important issues

I remember this very well. Dr Madan went to the APPG on ME and it was discussed there. Dr Shepherd tried to work with them to get it changed. Can't remember what happened after that. Dr Maden said that Chris Clarke from AFME recommended either Sharpe and White for their role. AFME was at the...

Sorry I forgot that not every one would know this. I get stuck times.

I've been using the MERGE one for many years

With Dr Bansal retiring that leaves very few doctors in the NHS left that could be of use to patients. I'm not sure how Dr Weir would feel about heading a clinic again. In London we still have Janice Main at St Charles and Gabrielle Murphy at the Royal Free (I think - it's been a while) but...

They pay your expenses to come to meetings if you are accepted on to the committee. I do know of lay members getting other incidental expenses paid as well.

I don't know if it is the same in the USA but last time we had a Judicial Review into the NICE guideline. Was at the court and great support from patients inside and out. Didn't work though. http://www.meassociation.org.uk/2009/03/nice-statement-on-the-outcome-of-the-judicial-review/

I thought Vance Spence made some really good points. He's a doctor and hasn't worked for 30 years due to the disease. That would have a good point for listeners to take in. A medical professional who has not recovered is a good foil for all the "just do CBT, exercise and LP" brigade. Also said...

MP - the PACE trial need to be exposed. The patients are so exhausted, in pain, crippled with ME we just don't see them. Missing millions mentioned

Patient (Emma ) asked what her day is like - make choices, wash hair/talk to friends. Every day choice of small activities. Large activities in bed in pain. Toll on mental health she is asked? It can be really difficult. Enjoy what you can do. Achievement making breakfast. Main problem is energy...

MP talks about treatment centers in England. Doesn't seem to understand that these are largely harmful The results of this trial is felt around the world - she has info from Europe and Australia from people harmed

Vance Spence - Feels like a "Hamster on a wheel" CMO report on ME "mike Armstrong" 12 principle recommendations and not one acted on why - politics medicine barriers 30 decades of ME and he is 69 (not worked since 39) He thought the report would set up a center of excellence and clinics. This...

PACE finally mentioned by name in statement by Govt Also says NICE guideline is being looked at MP says she hopes exercise will be removed from guideline Needs huge amount of education of GPs Very damaging headlines "exercise your way out of ME" Need better guidelines

MP now being interviewed Long term impact of trial (PACE but the name not mentioned yet) People are still being encouraged to exercise and this is causing harm

What happened when you followed treatment in this trial - became housebound, wheelchair My consultant told me that I should have tried harder Patients told to try this harmful treatment or you won't get disability payments Now interviewing Emma's Mother Emma was told she was at fault. Emma's...

Patient being interviewed (Emma Shorter?). Larger housebound and without research facing rest of life Diagnosed quite quickly. Had virus and never recovered Deteriorated with CBT - blamed for not improving You took part in trial funded by DWP ? Supposed to make you feel illness is due to false...

I'm listening now. Brief notes Controversial treatment debated in parliament next week Patients say it makes me them feel more unwell £5 million pounds Vance Spence - explain what ME is? Chronic long term condition muscle and brain. 2 types onset infection and 2nd longer What causes it ? - no...

For me Cyclizine was made the difference (and I used it with a cocktail of other nausea drugs) Roughly this was the group of different drugs I worked through (adding one to another until it was better controlled) Cinnarizine, cyclizine, promethazine - these medicines belong to a group of...

I had a trial of Heparin once over 3 months (twice) with injections once a week and a break in-between. It wasn't for anything ME related. Sadly it didn't improve any of my ME or POTS symptoms. I didn't get any better physical functioning i.e. couldn't stand or walk further. Post-exertion...

Thanks for the post Milo and for doing such an important job. Having had chemo for breast cancer I have nothing but admiration for the nurses. My experience was that I had Cyclophosphamide as part of the FEC-T regime. The nausea and vomited I experienced on the cocktail lasted for the entire 6...