The Way I See Things

Stonebird
Linda Crowhurst

The way I see things :

Myalgic Encephalomyelitis is being completely ignored.

Chronic Fatigue (CF) is the focus to such an extent that there is now :

• no body of experience
• no centre of excellence
• no well experienced medical consultants (with rare exception)
• no one knowledgeable to turn to
• no sufficient treatment protocol available
• no consistent universal information informing doctors about Myalgic Encephalomyelitis, its epidemic and individual nature, its WHO classification as a neurological,disease, its inflammatory nature
• no one consistently exploring possible anti- viral treatment.

ME is misrepresented, not investigated and certainly not medically treated, it is widely portrayed  as  if its underlying cause  has ceased to exist,as if there is none, as if  it is not a serious disease, as if it is going to resolve by itself and that we all got sick because we felt like it.

ME  has been buried deep within inaccurate, unhelpful, misdirecting terminology : Chronic Fatigue, Chronic Fatigue Syndrome, CFS, CFS/ME, ME/ CFS, Myalgic Encephalopathy, none of which are  the correct name or represent the true illness Myalgic Encephalomyelitis.

Funding for research has been squandered,millions of pounds have been wasted on psychiatric therapy ,justifying  the continuing mistreatment of patients and the misinterpretation of their illness as down to deconditioning and wrong thought.

Further, research has not been carried out on  samples of patients who genuinely have Myalgic Encephalomyelitis; the criteria for "fatigue" are so vague, the symptoms so minimal that every man and his dog could fit into them.

Meanwhile the serious severe symptoms experienced by the worst affected are down- played, not understood, not taken into account, not medically explained, omitted from research definitions, not adequately investigated, while the people who have them are left alone to deal with it.

The result is that the most ill :

• have inappropriate, inadequate or no medical support
• have little recognition
• have no one to turn to,to medically explain or suggest possible medical treatments or offer ongoing medical support
• are not safe in medical facilities where the illness is not recognised as physiological.

Patients are left trying to ensure their own safety, not knowing whether those who will interpret their illness, will understand it and its  implications;  they do not necessarily have the energy or capability to explain or articulate the complexities  of their  serious neurological disease.

The most ill are often too ill even to tolerate the basic care that they need. The danger of harm and deterioration is massive. It is impossibly difficult for them  to get the level of service required, even if it can be tolerated.

What we need :

• To call upon our governments to protect us from over three decades of psychiatric misinterpretation, misrepresentation, mistreatment and collusion.
• 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 CF.
• A gathering of serious, well experienced medical doctors 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 CF, firmly rooted in biomedical truth and acute awareness of how to care for patients, especially the most ill.
• A separating once and for all of ME from CF.
• 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. 
• The creation of a task force  consisting of people who have genuine knowledge and first hand experience of Severe and Very Severe ME, specifically excluding psychiatry,  to look into Health Service's negligence regarding the treatment and support of patients with ME , alongside  a  dearth of adequate provision, in order to create a Myalgic Encephalomyelitis service  that targets and listens to the specific and very real needs of the most ill, in order to offer them an appropriate and relevant service in a way that they can access .

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 end the psychiatric domination and abuse of people with  ME.

It is time to stop neglecting people with Myalgic Encephalomyelitis.

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

That time  is surely upon us.

The time to offer a genuine new way forward is here! Who will back us?

Linda Crowhurst
2015