Search results

Is it time for a joint initiative between the major charities to pay for a professional fundraising ? https://www.prospects.ac.uk/job-profiles/charity-fundraiser

JK Rowling lives in Edinburgh maybe she would like to contribute?

I did wonder when Doctors withME was being developed whether it would have been better for Charles shepherd to recruit them to MEA to enhance the medical offering and succession planning.

This also concerns me greatly.Riley and CS seem determined to ignore WHY the evidence-base that NICE produced.

Orthostatic intolerance is the SYMPTOM of feeling worse when in the upright position and needing to lie down. It doesn't have to have changes with blood pressure levels or heart rate and occurs in other neurological conditions eg multiple sclerosis.

MEA cannot promote both NICE guidelines and anecdotal evidence.

Agree

@Michelle the onset of the menopause triggered a severe decline in my symptoms so I ended up having to use an electric wheelchair indoors. 8 years later I have finally noticed an improvement. HRT relieved hot flushes but did not change my MEsymptoms

Why is he publishing this now and what is the large treatment trial? Is it GET-Lite with PROMS?

@PhysiosforME a useful paper regarding rehabilitation outcomes.

(Fezolinetant) is a hormone-free medication It's a neurokinin 3 (NK3) receptor antagonist and doesn't contain estrogen." Just posting this because hot flushes originate in the hyposalamus and the chemicals involveda are known. I always felt poisoned with hot flushes.

OI is a hugely significant symptom from the point of view of getting good clinical care.

For me there is the day to day malaise where you can still manage to do a very limited amount. The poison or toxic sensation completely inhibits activity. I have experienced it with alcohol intolerance, really bad PEM but also during hot flushes with the menopause which was extremely...

I have severe me and needed surgery three years ago. I had an A4 sheet with 12 bullet points which my sister discussed with the admitting nurse, the information was then loaded on the computer so that the ward had direct access to it. Unfortunately the first operation was not successful which...

Some areas now have community geriatricians which is maybe why Helmsley suggested geriatric specialty.

I assume Andrew Goddard prescribes CBT for irritable bowel syndrome. Also clinical experience counts for very little if you only see tiny cohort and you do not follow them long-term.

This needs to be understood and emphasized more by advocates. Compare us to other illnesses where people are switched back on

Would it be possible to get a presentation of some kind at a rheumatology conference? Brian Hughes is excellent on PACE and philosophy! Caroline Kingdom on visiting severe me patients

Hope4ME and @JoanNI have been the driving force behind this project

Do we need a global database of these cases that is updated annually?