To ask the Secretary of State for Health and Social Care, if he will take steps to expand NHS specialist chronic fatigue syndrome services in (a) Sussex (b) Kent and (c) other areas across the UK; and if he will make a statement. https://www.theyworkforyou.com/wrans/?id=2020-03-10.27580.h
The Invisible Ones This is a very powerful video about Severe ME (from Sweden) SEE HERE
GREAT NEWS regarding my complaint to the GMC about the PACE authors The Information Commissioner’s Office [ICO] has slapped a Decision Notice on the GMC. The GMC must release the evidence base for its determination not to investigate the PACE authors or admit that there was no evidence base for Read more…
New report on the most serious ME-sick Between 2500 and 5000 ME-sufferers have severe or very serious ME, and receive little to no follow-up in the health sector. “Very few have wanted to take them,” said scientist. A recent report from the NORWEGIAN Me Association has mapped those most AFFECTED Read more…
Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that cognitive behavioural therapy (CBT) led to no change in their physical Read more…
The Backbench Business Committee has granted a debate on ME. It will take place on the afternoon of Thursday 24th January. It would be helpful if you could encourage the community to approach their MPs to request their support. Any briefings would also be appreciated. The motion to be debated Read more…
Introduction As a doctor, and perhaps especially as a junior doctor, there will no doubt be occasions when you are overwhelmed by the demands placed upon you. Times when you will feel powerless in the face of suffering and frustrated by the limitations of medicine. What you might not realise Read more…
On International Day of People with Disability, please note some disabilities are invisible. Also some disabling conditions (e.g. chronic illnesses, chronic pain conditions) can fluctuate. Me: I don’t need a wheelchair for very short distances, but do for longer ones. https://www.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill-34153140.html?fbclid=IwAR2gQzjRkAJIV1DYjAkObehMK8J4y09ODZluuzCPbirDn4J2Wit0BSX7rA0
August 01, 2018 The latest update to the electronic health records system used by GPs in England was launched yesterday, listing M.E. as a neurological disorder. Previously it had sat under the headings Mental Disorder (which was removed in 2015) and Multisystem Disorder (which was retired in January). The system, Read more…
Over a hundred academics, patient groups, lawyers, and politicians have now signed an open letter to the Lancet calling on the journal to commission an independent reanalysis of the data from the PACE trial—a study into treatment for myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), which it published the results of in 2011.1 Read more…