Statement from Angela Kennedy to Dr Des Turner, MP, Chair of APPG on ME
Like the other letters published yesterday, [see Letters to RiME, July 2007: NHS Clinics: More patients’ concerns] I too have sent a statement to Des Turner, and asked him to read it out at the APPG meeting. In case this does not happen, I am publishing it so that anyone going to the meeting can, only if they support my position as below, read out the statement if they so wish. I hope it adds to the arsenal of correspondence which might be used by people to establish a coherent critique of the current situation, and prevent any potential `Panglossing’ by any parties with vested interests.
Statement sent to Dr Des Turner, MP Chair or APPG on ME
“I am a mother of a severely disabled young woman who was diagnosed with ME/CFS. I gave evidence at the first Oral Hearing of the Gibson Inquiry. I have also written a document summarising the main flaws of the psychiatric paradigm of ME/CFS, which was submitted to NICE by the One Click Group in response to the call for evidence, and the publication of the final draft guidelines.
I became politically active in ME/CFS patient advocacy in response to the negligence and mistreatment of my daughter by the British Medical Profession, which I have had the misfortune to witness since she first became ill at age 13, and as she enters into her seventh year of this horrific illness.
As all members of the APPG will be aware, ME/CFS sufferers and their supporters have long been concerned with the way they have been treated, and the flaws in research methodology, theory and treatment approaches practised by some parties in the UK against sufferers, and the endorsement of these by the UK government, despite the evidence of the harm these have caused.
The ‘CFS’ centres are a case in point.
Members of the APPG will already be aware of the many complaints from advocates about these centres, highlighting the fact that the only treatments often available are Cognitive Behavioural Therapy and Graded Exercise or Activity. Both of these approaches have been criticised as being harmful to ME/CFS sufferers, by sufferers themselves, advocates and scientists alike. The evidence base for claims to success have been demonstrated as limited at best, but also highly flawed and confounded, because of both sampling methods, and ideologically-informed belief systems of the researchers and practitioners themselves, about the illness and its sufferers.
Indeed, from the evidence available, it is clear that at least some of these centres are using criteria that actually exclude ME/CFS sufferers. I understand that the Kent Service excludes patients with clinical evidence of other causes of fatigue and people with neurological illness. As members of the APPG will no doubt be aware, ME/CFS is a neurological illness, as defined by the World Health Organisation. It is therefore likely that sufferers of ME/CFS will exhibit neurological impairment. The Centre at Barts are recruiting those suffering `fatigue` primarily, with ‘negative/normal’ blood results.
These particular clinics are not effectively diagnosing ME/CFS, using criteria such as Oxford (which actively excludes neurological ME as a diagnosis for their version of Chronic Fatigue Syndrome) or Fukuda, a research, not clinical, set of criteria known to be at risk of both selecting fatigue problems that are NOT neurological ME and potentially excluding neurological ME/CFS sufferers. Their continued obstinate refusal to use validated diagnostic criteria (Canadian Criteria) causes a situation where people, severely impaired by neurological illness, are treated as if they have fatigue caused by psychological factors.
By the logic of these centres, ME/CFS sufferers should not even be treated by the very centres ostensibly set up to treat them.
The problem is compounded by the fact that, unfortunately, so-called `negative’ or ‘normal’ results in very limited blood tests might well be found in severely impaired ME/CFS sufferers (and those diagnosed with ME/CFS as a `wastepaper’ diagnosis, later found to have another disease). Many doctors are now not investigating such patients thoroughly. Indeed recent documents authored by leading proponents of the psychiatric paradigm have demonstrated that this is a result of exhortations from such proponents not to make detailed investigations. Two examples, given by patients, of medical failure to investigate are: making limited thyroid tests without testing for Hashimoto’s disease, and not investigating even when presented with signs and symptoms of orthostatic intolerance. But I also know of people where blood abnormalities were found (consistently raised ESR, indicating long-term infection, or changes in red blood cells) but the doctors have still dismissed them as `clinically insignificant’.
So ME/CFS sufferers may, perversely, still find themselves targets of these Centres, even though the evidence indicates the approach carries significant risks to such patients. So at least some, and possibly most, of these Centres are failing ME/CFS sufferers on two levels: promoting an approach that is ineffective for the actual disease, and which also endangers sufferers of the disease.
The evidence demonstrates that Centres such as Barts and Kent are just not equipped to effectively diagnose, or treat safely, sufferers of the neurological disease ME/CFS. Other centres are likely to suffer from similar problems. ME/CFS sufferers are therefore, once again, being placed in an intolerable and dangerous position. While the term ‘Kafkaesque Nightmare’ might be a tad overused in modern culture, it seems curiously apt for the the situation facing ME/CFS sufferers.”
12 July 2007