This is what we want.

Stonebird

It is time to stop neglecting people with Myalgic Encephalomyelitis.

It is time  to end the psychiatric domination and abuse of people with  ME.

It is time to stop the outrageous  misrepresentation of  people who are genuinely unable to move or are so weak they can barely function and who do not even have the required energy to enable full functioning of their own systems and functions, as exercise- phobic.


It is time to stop  fobbing people with ME  off with little or nothing, with no due consideration of their real needs.

We call upon the UK Government to protect us from over three decades of psychiatric misinterpretation, misrepresentation, mistreatment and collusion, by instigating :

• A realistic, viable, specific definition of Myalgic Encephalomyelitis, that separates ME from vague fatigue conditions , alongside  better diagnosis and treatment of those fatigue illnesses.
• Funding of serious biomedical research using standardised, realistic research criteria that enables genuine research into the correct group: people with the full symptom experience of ME.
• A new biomedical pathway specifically for ME not Chronic Fatigue.
• A task force to investigate the symptoms of ME, specifically the most ill, excluding psychiatry totally from interference , misdirection, misinformation.
• Those who mistreat and misinform about ME, to be held to account.
• A sensitive, flexible, home bound service , giving assurance that this disease will be understood and treated with respect.
• ME training to be  actually about ME not Chronic Fatigue, firmly rooted in biomedical truth and acute awareness of how to care for patients, especially the most ill.
• An acknowledgement  that the psychosocial pathway is harmful, dangerous and misrepresentative of people who have the neurological disease, Myalgic Enceohalomyelitis.
• An apology  for the deliberate and consistent degradation of this disease, the psychiatric mistreatment and misinformation that has been allowed to go from strength to strength for decades, the medical neglect and lack of safety, the lack of respect,  for those who have died from the disease without proper medical understanding or appropriate treatment, or even proper acknowledgement  on their death certificates.
• The views, opinions, experience, knowledge and needs of the most severely affected to be fully taken into account.
• An end to basing service provision or research  unrealistically only on those patients who can attend meetings, appointments, travel distances regularly and still engage with the world fairy regularly : they just do not represent the terrifying reality, not the full experience of this devastating, tormenting illness.
• An end to the  misrepresentation of Myalgic Encephalomyelitis as a treatable fatigue condition.
• Better scientific recording of test information and objective measurable medical changes.
• Genuine medical treatment to alleviate symptoms. To seek understanding that will lead to a physical cure, by first identifying the illness accurately and safely.
• Serious medical research into the underlying causes of the disease,specifically enteroviruses , including mitochondrial dysfunction, channelopathies, genetics, etc, as well as  medical recognition and physiological identification of symptoms, not commonly validated or currently properly recognised : the mechanisms whereby people become paralysed,  investigation into the stroke- like and seizure like episodes, the underlying physiological cause of the continual muscle spasms people experience, the underlying reason for parasthesia and hyperesthesia, the underlying causes of the environmental sensitivities experienced: noise sensitivity, light sensitivity, chemical sensitivity, food and drug sensitivity, movement and motion sensitivity and how to treat them so that people are not left with nothing as is currently the case. 

It is time to offer a genuine new way forward .

Greg & Linda Crowhurst