Compromise is not acceptable

Stonebird statement on the UK CFS/ME Research

Collaborative

THE PSYCHOBABBLERS STRUCK AGAIN…
..as they announced a new UK CFS/ME research Collaborative…(to) ..study “functional somatic syndromes and prior mood disorders.”

THE NATIONAL FORUM, SUMMER 2013, NATIONAL CFIDS FOUNDATION

To compromise the truth of ME is to compromise lives. 

It is time  to stand up for Myalgic encephalomelitis as a distinct neurological disease. To cooperate with the new collaborative initiative, to attract research funding sounds seductive and appealing to the unaware - however it is to accept the  research of poorly identified cohorts of patients , including those who do not have ME at all, but have been collected together under the insidious umbrella title of CFS.

CFS standing for Chronic fatigue syndrome, is a complete misrepresentation of our disease and a denial of many of our most serious and disabling physical symptoms.

For too long people have compromised.

For too long have we been misrepresented by those who should have been speaking up for us or worse those who speak in our name - but in reality are representing and condoning the misinterpretation and mistreatment of ME as chronic fatigue in all its many forms.

There can be no place in Myalgic Encephalomyelitis research for psychiatry. If only this message had been given loud and clear by the ME community and the medical profession.

 If only the charities had all stayed true to identifying the neurological symptoms and representing our case accurately to the media and the government, ensuring the medical profession did just that too.

If only they had not accepted poor weak criteria identifying vague chronic fatigue as equivalent to Myalgic Encephalomyelitis with all its complex range of severe neurological and multi system dysfunction and symptoms. 

How can someone who is tired all the time or who uses mental techniques to get well, be  equated with those of us who  are shut away from ordinary living, in darkened rooms, too noise sensitive to have direct contact with others, too ill to sit up or move, paralysed, shaking with massive physical spasms, in agony on every level, experiencing burning throbbing screaming tortuous levels of pain, unable to eat, unable to swallow, unable to fundamentally live in the normal ways of the world?!

 How can it be that the money so far has predominantly gone to the " tired all the time"  misrepresentation of ME? 

And how can any charity or person with ME think that colluding with others who misrepresent us in every way, can be acceptable to the genuine severe ME sufferer?

Do not be fooled into thinking that your life will get better by this collaborative. No !!

 Who is actually studying us, the severely and very severely affected , the ones devastatingly afflicted and at risk of being hurt further by wrong or poor research interventions?

 How many of you have been involved in research? We doubt very many at all and certainly not the worst suffering, the most ill of us, who cannot bear any contact with anyone.

It is time for the ME community to wake up and understand who - if anyone - has their best interests at heart. Who is truly researching the illness we actually have? 

Who is identifying us clearly to make sure the research results are representing us and not other illnesses or conditions?

For sure Psychiatric support might be valuable to those who are secondarily depressed, but to include and collude and accept psychiatric research at the heart of ME research by backing their involvement and accepting their validity, when in reality they deny our reality and deny that we are physically ill, is unacceptable, especially given there is a gagging clause involved where those involved cannot criticise any of the research. 

How can that be acceptable to anyone who represents ME ? 

Biomedical research and validation of ME as a neurological disease in the UK has been set back at least 20 years by the psychosocial focus. Be clear about it, you cannot compromise on the truth of severe ME, neither should we accept it any longer.

By using the term CFS/ME and accepting its usage in research and  the health service, the mainstream charities have unfortunately contributed to the confusion and misrepresentation of our devastated lives and our physical disease. It only causes confusion and leads to our true needs continuing to  go unrepresented and unmet, unheeded, unseen and unsupported.

It is late, but it is essential to make a stand. 

It is late but necessary for us to say loud and clear that this is unacceptable misrepresentation and wrong validation of CFS instead of the correct term for the specific illness Myalgic Encephalomyelitis. 

We have to be clear that :

• more research into CFS/ME serves no one
• using poor criteria serves no one
• allowing psychiatry to misrepresent ME as CFS caused by wrong illness beliefs and deconditioning serves no one with Myalgic Encephalomyelitis. 

Colluding and collaborating with psychiatry does not serve us or help us get biomedical accurate appropriate relevant tests, treatments or cures.

 Using the Oxford criteria for identifying cohorts does not help us . 

Using Fukuda criteria  to identify cohorts does not help us. 

Ignoring paralysis, spasms, dysautonomia, swallowing difficulties, MCS and other severe ME symptoms DOES NOT HELP US! 

Condoning or collaborating with the new collaborative, supporting fatigue as the primary symptom of ME WILL NOT HELP US.

We have to make our physical reality, our physical neglect and our needs known. 

As so many said on August 8th,  “Remember us, remember them”. Let that be our motto for this day and every day.

We are the  severely ill and we are here. 

Compromise is not acceptable. Let us not accept it!

GREG & LINDA CROWHURST
14TH AUGUST 2013