To: Department of Health

Fair Treatment for M.E Patients

Fair Treatment for M.E Patients

Learn. Educate. Attend the Invest in ME Conferences, read the research papers and learn about the disease. ME patients have the same rights as patients with any other disease yet we are treated as second class patients.

GPs are the first port of call for ME patients and many struggle to diagnose the condition. They need to understand that the condition is from an infectious origin,it's real and no amount of therapy or antidepressants is going to change that. The entire system of diagnosis and treatment needs to be changed, doctors attitudes to the illness need to be changed.

Why is this important?

Approximately 44% of patients are misdiagnosed with other conditions such as Ehlers Danlos Syndrome and POTS. Doctors need to know how to recognise the condition and services need to be improved to offer sufferers better options than Cognitive Behaviour Therapy and Graded Exercise Therapy which has recently been proved does not benefit the patient and in many cases, makes them worse. The psychological approach to treating ME in the United Kingdom needs to end. Patients being classed as having a psychological disease which they have not got means they are generally ignored and other serious medical conditions are missed. The rate of deaths from ME is rising and it's time the NHS did something about it. The NICE Guidelines need to be reviewed in light of the IOM report which has been completely ignored by the Department of Health and patients need to be taken seriously.

Current research is just being completely ignored and certain medical professionals are controlling the entire system, not allowing any other specialists access to work with ME patients. Not enough money is being pooled into NHS ME services, many have been cut and most are patchy and offer limited support and treatment. The 25% of bed-bound patients, the severely affected proportion of sufferers are not seen by anyone, they lie in bed, in darkness, ignored by the medical profession. Clinics should offer home visits to bed bound patients. Studies by Chris Snell and Prof Mark Van Ness have proved that exercise makes ME patients worse yet the UK insists on forcing exercise upon it's patients.

Category


Reasons for signing

  • I am severely affected and bedridden for ten years, I am invisible to the medical profession. I suffer severe neurological symptoms 24/7. It is the most horrendous illness To live with as it goes on and on unabated with no relief of symptoms. I do not live I exist.
  • Nobody wants to to feel weak, physically sick with exhastion & helpless. Especially when they have always eaten a well- balanced diet, participated in sport, had great careers and then, usually after a virus or a serios illness - been 'struck down with this horrific & debilitating illness ME, CFS and usually in pain with Fibromyalgia .... Its heart breaking ...
  • I have had ME since 1965 and have been treated appallingly. I have been bedbound for the last 14 years due toa complete collapse caused by the ignorance of the medical profession.

Updates

2015-04-09 18:18:11 +0100

1,000 signatures reached

2015-04-09 08:19:06 +0100

500 signatures reached

2015-04-08 20:44:18 +0100

100 signatures reached

2015-04-08 19:15:25 +0100

50 signatures reached

2015-04-08 18:12:11 +0100

25 signatures reached

2015-04-08 17:37:45 +0100

10 signatures reached