Letter to Paul Burstow - Patient Quotes

Andie Pring:

Patient Comments:

The MRC

Why can't the government put pressure on the MRC? After all, isn’t the funding for research allocated from the government? Susan Rogers

“The government will not take responsibility for whatever research the MRC decide to spend taxpayer money on. This is unacceptable. They (MRC) must be held accountable for wasting taxpayers money on psychological/psychosomatic research into ME. Where has all the psycho research benefited the ME community? Oh yes, clinics set up by the dept of Mental Health to give us CBT and GET. Wonderful!” Paul Dacre

Psychiatrists

“What value is there in having so many psychiatrists/psychologists on the MRC group who will determine which research proposals get a share of the 1.5 million.” Sue Howley

“How can the puppet master at the SMC only allow negative reporting on XMRV and why is this guy "The self appointed expert" on a neurological illness when he is ONLY a psychiatrist?” Derek Benyon

Personalised Care Plans

Many neurologists either do not accept ME as a neurological condition and/or are poorly informed and usually follow, like GPs, the NICE guidelines. The same point applies to GPs. How can GPs develop personalised plans with us, when they have the same attitudes as neurologists? Susan Rogers

Classification

‎"CFS/ME" does not exist in the WHO list of definitions (Mr Burstow said that it did). ME is defined under Post-Viral fatigue syndrome (which at least indicates an infectious onset). CFS does not exist according to the WHO. Emily Richards

Mental Health Label

“That we do not have a problem with a mental health label if we have mental health problems. We're angry at the label being attached to us because ME/CFS is not a mental health problem. How would he feel if he had a diagnosis of AIDS or cancer and was referred to mental health services - no chemo and no anti-retrovirals?” Sarah Lawry

“ Chronic fatigue is known as part of the clinical picture PTSD, depression and some other mental health conditions. We have no problem being labelled mentally ill, if psychological factors were a causation in ME.” Susan Rogers

“Is he aware that, unlike other illnesses for which CBT is used as an adjunct, CBT as applied to ME is the central treatment. And can he assure us that anyone undertaking a course of CBT at a CFS Clinic is not then labelled as being mentally unwell. As others have mentioned, I wouldn't be kicking against a diagnosis of depression for example, if I were depressed. He's misinterpreting our reaction against being labelled mentally ill, it's not that we are rejecting the stigma of mental ill health, it's that we are rejecting the label of mental ill health because it is not a symptom of ME. Which is not to say someone with ME won't get depressed at some point down the road - having a disabling illness that is widely considered bogus yet robs you of your life, with little or no care from our healthcare professionals etc, etc having a disabling illness that robs you of your life etc would be enough to make the hardiest of souls feel blue. But it's the least of our worries - help us with the other stuff and depression is far less likely to arise as a reaction to the neglect.” Sue Howley

Neurological Alliance

“It seems to be to be a cross between a glorified directory and a quango. I'd like to know exactly how engaging with that is supposed to help us?” Rosie Cox

“The Neurological Alliance is our friend? Neurologists consider ME or CFS to be a psychiatric diagnosis. When I got unwell, the only specialist I was referred to was a neurologist who went on to refer me to Alastair Santhouse of Kings. I.got diagnosed and the only option I was given was for a course of CBT. I went in good faith but it didn't help. I'm still unwell, no surprises there.” Sue Howley

Diagnostic Criteria

“As there MAY be with any long term chronic illness and especially as ours is fraught with such medical ignorance, neglect, and abuse, leading to all the social and economic factors too, social exclusion, loss of income, difficulty obtaining benefits etc. Psychological SYMPTOMS should be excluded from DIAGNOSTIC criteria and hence even more need for disease biomarkers to be agreed. Oxford criteria must be scrapped. “Jo Best

NICE Guidelines

“The NICE guidelines fail to address this complex neurological condition.” Anne Robertson

“You are wrong to say that the NICE Guideline is only a suggestion of treatment as we all know our GPs refuse to countenance anything which isn't advised by NICE for fear of reprisal.” Rosie Cox