The Times: ME sufferer who was dismissed as hysterical vindicated in death | 29 May 2018 Read More »
“We had doctors saying we just don’t believe in ME. When everyone is saying that to you it’s like a nightmare you can’t get out of.”
Dr Shepherd reflects on the recent inquest findings and media reports into Merryn’s tragic death from M.E.
2018 CMRC Research Conference: Register Now for ME/CFS Bristol Conference | 25 May 2018 Read More »
The CMRC Research Conference is a fantastic opportunity for researchers and patients to network and to hear more about M.E. research developments.
The Education Committee is seeking parental views on SEND which may affect children with M.E.
Inquest Ruling: Young drama student Merryn Crofts killed by M.E. | 18 May 2018 Read More »
Pathologist Daniel DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain.
New research that will examine both immune system dysfunction in M.E. and defects in the way that energy is being produced at a cellular level.
ME Awareness Day: BBC Newsbeat – Millions Missing London Protest | 14 May 2018 Read More »
“The way I describe it is I’m actually grieving the loss of my sister because she’s not around anymore.”
Due to the stigma of the condition Merryn was “embarrassed” about having ME, and was reluctant to tell people that was what was wrong with her.
I had just finished my GCSEs when I got ill. I noticed I was getting worn out uncharacteristically quickly.
Dr Shepherd says the problem with GET is that it’s too rigid and pushes patients too far.
“Graded exercise therapy mistakenly assumes that ME/CFS fatigue and disability result from inactivity and deconditioning.”
Joan McParland found herself bed bound due to the debilitating, energy sapping condition ME, but she is now helping others with the illness to campaign for an improvement in services.
Huffington Post: I Am Stuck In The Prison That Is ME | 13 April 2018 Read More »
Have you ever laid in bed and felt so ill that you truly thought you were going to die?
ME Association March Summary of ME/CFS Published Research | 09 April 2018 Read More »
The monthly summary of ME/CFS research publications for March 2018.
The Countess of Mar writes on behalf of Forward ME to the Science Media Centre asking for a retraction of inaccuracies in their ‘factsheet’ on ME/CFS.
Merryn Crofts died on May 23 last year, 10 days after her 21st birthday.
The GETSET Trial: Letters to The Lancet and a response from the authors | 26 March 2018 Read More »
A total of five letters have now appeared in the Lancet critiquing elements of the GETSET trial, and the authors have now issued a response to all of them.
“Forced exercise above very low levels characteristically incapacitates most patients.”
“The message is clear – CBT and GET are not effective ways of treating a serious neuroimmune disease. The sooner this message gets across to health professionals the better.”
Dr Shepherd: ‘This new research demonstrates a defect in thyroid hormone activity rather than actual thyroid gland disease.’
