Stop Ignoring ME

ME is one of the most misunderstood diseases. 1 in 5 parents face child protection proceedings, patients have been sectioned and abused, NHS treatments make over 50% of patients worse, biomedical research has been pitiful. A global health scandal that has been ignored for over 30 years.

ME has a lower quality of life than HIV/AIDS, Stroke, Parkinsons, Multiple Sclerosis [1], but is one of the most misunderstood diseases. 80% of doctors think its psychosomatic [2]. Misunderstanding has led to 1 in 5 parents face child protection proceedings [3]. A recent example is an April 2019 iNews article where Georgia Whyard's teachers said she had 'school phobia' despite having an official diagnosis of myalgic encephalomyelitis [4]. Misunderstanding has led to patients being sectioned. In 2003 police forced entry into Sophia Mirza's mother's home, sectioned, and forced Sophia to a mental hospital. After being released Sophia had severely deteriorated and later died. An independent Neuropathologist found Sophia's spine contained massive infection and Sophia was the first patient to have ME listed as her cause of death [5]. Misunderstanding has led to abuse, Ean Proctor was removed from his home against his parents' wishes and hospitalized under a "Place of Safety Order." While in the hospital his health deteriorated as he was subjected to inhumane treatments: being placed into a therapy pool to force him to use his arms to swim, although he was unable to and would sink underwater; [6]

Many ME/CFS patients have been harmed by Graded Exercise Therapy. Over 50% of patients consistently report a worsening of their condition in an analysis of 18000 patients from 10 surveys from multiple countries [7]. Many have been made permanently disabled.

The PACE Trial has been widely discredited [8] Over 100 scientists and over 80 international charities (Nearly every one) signed an open letter asking for the trial to be independently reanalysed [9]. Former science teacher Carol Monaghan MP described PACE as "one of the greatest medical scandals of the 21st century" and said "As a scientist, I am appalled by the methods used in the trial, which included changing the parameters and success criteria midway through the study. This has been widely discredited in the research community"

Over 30 MPs have signed up to the MAIMES Campaign calling for an investigation into The PACE Trial [10]. ME receives a disproportionally small amount of UK research funding given the prevalence of the condition. Despite the disease burden, the level of research spend per ME/CFS
patient is considerably lower than in other illnesses. MS, for example, receives approximately 20 times more funding worldwide despite 2.5 times less prevalent than ME [11].


[1] https://journals.plos.org/plosone/art...
[2] https://podcasts.apple.com/gb/podcast... (4 mins 50)
[3] https://www.actionforme.org.uk/upload...
[4] https://inews.co.uk/news/real-life/te...
[5] https://me-pedia.org/wiki/Sophia_Mirza
[6] https://me-pedia.org/wiki/Ean_Proctor
[7] https://journals.sagepub.com/eprint/h...
[8] https://www.me-pedia.org/wiki/PACE_trial
[9] http://www.virology.ws/2018/08/13/tri...
[10] https://www.drmyhill.co.uk/wiki/MAIME...
[11] https://www.meassociation.org.uk/wp-c...

TWITTER:   / abrokenbattery  

GET INVOLVED:
ME Association (UK Charity)
https://www.meassociation.org.uk (Patient Support)
https://www.meassociation.org.uk/rese... (Research)
Invest in ME (UK Research Charity)
http://www.investinme.org/lander17.shtml
Tymes Trust (UK Children Support Charity)
https://www.tymestrust.org/
Open Medicine Foundation (USA Research Charity)
https://www.omf.ngo/
ME Action (Global Grass Roots Action Charity)
https://www.meaction.net/
Science for ME (ME Science Forum)
https://www.s4me.info/

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