Discussion of M.E. with Knowledgeable Patient Elizabeth Moncrieff following Film Screening of Unrest
Bullet points of what you would like to talk about:
- Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome).
- Preconceptions versus reality
- The damage the Psychiatrists can do
- Carers Conundrums
- Being cared for versus being alone
- If you know anyone with the illness what is helpful and what is not
- Any other issues the audience would like to discuss
A few paragraphs on your subject:
The film shows the hidden lives of people with severe M.E. (Myalgic Encephalomyelitis) and was filmed by Jennifer Brea who was a Harvard PhD student when she became ill. Jennifer was full of life and about to marry when she contracted this devastating illness.
This is a beautifully shot film which is informative, whilst being heart-warming, sad and even funny at times. Fundamentally it is a documentary but it is also a love story as her new husband also has to cope with a very different life from his expectations. It raises many issues.
A few paragraphs about you:
I developed mild ME, in 1966 after a bout of flu during which I was hallucinating but once I had recovered and back at school various symptoms were dismissed as growing pains, laziness, mild infections, whilst other symptoms I put down to being unfit and/or just odd in the way that pins and needles and stiches are odd, and so never mentioned them.
At university I couldn’t stand the assault to the senses of discos and parties and couldn’t understand how anyone could find them to be fun. I loved current affairs politics, psychology and learning in general, but my memory was poor, however once I understood something I could reconstruct it and so I got a joint honours in Economics and Psychology.
Over the years it gradually got worse until, by 1984, I was too exhausted to continue my lecturing career at Napier. Surprisingly I was just puzzled by my word finding difficulties and concerned about being a poor lecturer rather than seeing it as a symptom of an illness.
When I was working as a clerk in a finance department in1990 I developed moderately severe ME after a chest infection. I couldn’t add up anymore and could barely walk and frequently passed out when standing. After that no doctor could tell me there was nothing wrong, as had been happening since my teens, and I could no longer kid myself that everyone felt the pain, fatigue and dizziness etc. that I experienced nor that I was just an unfit wimp. I was almost bedbound and more or less housebound for many years.
With gradual recovery, during the noughties and with my love of psychology I started part-time training as a counsellor in in the mid 2000s but this caused a relapse. I then became involved in the Cross Party Group on ME in the Scottish Parliament which was unfortunately disbanded some years ago but not before the patients managed to get the Scottish Guidelines for GPs a little improved.
I have read extensively on the subject with a particular interest in the research which gave me hope, and fortunately for me, the basis of some helpful medication. Unfortunately as they were small studies I don’t know of any other patients who get these treatments on the NHS. Research has not been financed by Governments so there are no large studies into biomedical causes and so no big breakthroughs, but over 9,000 small studies all producing biomedical/physiological evidence of the disease.
What free internet knowledge resources would you recommend to others if they wish to explore your chosen theme further?
UK Patient Support Groups:
The ME Association – https://www.meassociation.org.uk
Action For ME – https://www.actionforme.org.uk
25% ME Group (representing the 25% of ME sufferers with severe ME) – https://25megroup.org
Tymes Trust (for children with ME) – https://www.tymestrust.org
UK Groups with a focus on research:
MEResearch UK – http://www.meresearch.org.uk
Invest in ME – http://www.investinme.org/index.shtml
US based groups
#ME Action – https://www.meaction.net
Phoenix Rising – https://phoenixrising.me
Paul Cheney Seminar (sound with slides unfortunately the sound quality is not good (part 2 is better) but worth the effort if you want to understand some of the biology from loss of finger prints to heart studies. Quite technical) –
Jennifer Brea Ted Talk
Elizabeth says patients and carers need to know these – Top 10 Things you should know about Post-Exertional Malaise Snell, C et al answering questions (intro is about 7 minutes and can be skipped especially as sound quality is poor but slides are easier to follow)
What are your weblinks?
Public Email – [email protected]
This event took place at St John’s Church Community Hall (Princes St, Edinburgh EH2 4BJ) on 9th Oct 2018