Letters to RiME, June 07: NHS Clinics: ME Patients’ Concerns Unaddressed
On 17/4/07 Dr Ian Gibson MP, leader of the Gibson Inquiry and APPG on ME Secretary, wrote to a person in Lewisham, London:
“…I do not think the info from Barts is a satisfactory diagnosis of neurological ICD-ME…If you read the Group’s report we make it very clear that we have serious concerns about the use of GET and we state that it can be harmful to patients with CFS/ME. However we also state it should be offered to CFS/ME patients as an option but with a warning. This is because it can be harmful to people who are diagnosed with CFS/ME. These people may not have neurological ICD-ME, they may have chronic fatigue, somatisation or some other unknown disorder. Given the broad remit of some of the current CFS/ME definitions used in the UK, which you have demonstrated in your example from Barts, it would be wrong to deny these patients the option of GET, as it is helpful in some cases…”
Dr Gibson is saying, then, that people with a range of disorders – ME, Chronic Fatigue, Somatisation… should be admitted to the new NHS Clinics, all under the banner ‘CFS/ME’, whatever this means. I will leave you to pause and consider the implications of the above statement…
There is little I can add, here, but reiterate RiME’s position regarding nomenclature. Things can only improve for patients who have a neurological illness, described by the WHO Code G93.3 and Canadian Criteria, if that illness is differentiated from other illnesses and conditions. The Gibson Report didn’t do this. It left the pivotal issue of nomenclature open-ended and unresolved, and it looks as though its authors will not meet again to discuss proposed amendments.
ME, thus, will continue to be fudged with Chronic Fatigue and other conditions, and ME patients will be offered treatments which might help some of the former ie GE/CBT models. No wonder ME patients around England are boycotting the NHS Clinics.
On 30/3/07 Dr Gibson wrote to a person in Orpington, Kent:
“…I think the Kent Medway Referral Criteria has failed to effectively consider the symptoms of ME. They describe within them some general symptoms of Chronic Fatigue (CF) which when taken together may be considered a syndrome. However I think to deny ME is a major neurological disease directly contradicts the WHO definition and cannot be correct. This service is effectively a chronic fatigue service not an ME service.”
The title of Professor Trudie Chalder’s book ‘Coping with Chronic Fatigue’ does not imply it is intended for CFS or ME patients rather patients with CF. CF which could have been caused by any number of factors, including factors excluded in Section 5 of the referral criteria such as melancholic depression. It may be appropriate advice for patients with CF. Some patients who have been diagnosed with CF and/or CFS find GET useful and newly diagnosed patients should not be advised it is an option while also being advised of the risks. I would not support the advice in Chap 2 or 6 as appropriate advice for ME patients…
Based on Dr Gibson’s reply to London (above) it would seem logical to conclude that he believes: (1) people with neurological ICD-ME shouldn’t be excluded from the Kent Clinics but (2) they should attend alongside people with Chronic Fatigue, Somatisation and other disorders (The Kent clinics are – Chronic Fatigue units offering CBT/GE).
Regarding Professor Chalder: he deems advice in her book ‘Coping with Chronic Fatigue’ inappropriate for ME patients, but the Gibson Report said that Chalder’s work was impressive.
On 30/3/07 Dr Gibson wrote to a person in Surrey:
“…I do not think the ad you refer to describes ME. I think it is insulting to ME patients. That said I do not think that we should scrap the ME clinics the Dept of health has funded so far. It is a great step forward to actually have centres for ME. I agree that a number of these centres work to an unsatisfactory psychological model of treatment however they are a basis to work from. We should be focusing efforts on ensuring these clinics modify their services so they offer treatment and support appropriate for people with ME. At present there are no national guidelines for treating ME. Once the NICE guidelines are released in Oct. we will have a better idea of how to tackle this issue head on.”
[Ed: The NICE clinical practice guideline for CFS/ME is due to be published on 22 August 2007, not October as stated by Dr Gibson.]
Surrey Reply to Dr Gibson 15/5/07:
“…You also say, ‘We should be focusing efforts on ensuring these clinics modify their services so that they offer treatment and support appropriate for people with ME’. Well, ME patients and delegations have raised concerns but seem to have got/be getting nowhere eg a delegation of The 25% ME Group in neighbouring Kent raised concerns re. nomenclature and resulting treatment, but their representations were rejected. ‘Professionals’ involved in the mental rehab units are committed to a psychiatric aetiology eg one of the protagonists of the London Barts Clinic – wasn’t he the person who led the walk-out from the skewed CMO process because it was too ‘physical’ and not sufficiently psychiatric..?
I’m not sure RiME can add much to this point.
APPG on ME
Moving on to APPG. Its Chair, Dr Des Turner MP, circulated a memo 16/11/ 06: The APPG and the Secretariat (AfME and The ME Association) accept the WHO Classification of ME as a neurological condition…
This is all very well, but the principle is not being applied in practice.
In the House of Commons 6/3/06 Dr Turner supported the NHS Clinics per se in England. But this would include centres where people with neurological ICD-ME are being excluded by definition eg Section 5.4 of the Kent Admittance Criteria, and other clinics ie Barts where there is a strong case for people with neurological ICD-ME not being admitted.
Dr Turner can’t say he isn’t aware of people’s concerns. Many have written to him. At the July ’06 APPG on ME Meeting I presented him a dossier of 34 letters with a covering letter; the letters contained ME patients’ concerns about the clinics from around the country. Common issues were nomenclature and diverting the £8.5m into biomedical research. Here is one of the letters from a person in Kent dated 11/7/06:
“… As a long term ME sufferer I am amongst those who find my local services offer nothing to assist with the debilitating and distressing symptoms of ME. Neither do these facilities differentiate between idiopathic chronic fatigue and the neurological condition ME; subsequently a one size fits all mental rehab approach is applied. As a result I strongly oppose any future funding of these clinics in their current from and would prefer to see the money diverted to biomedical research that investigates the cause and which ultimately finds a cure for ME…”
Dr Turner didn’t reply to this letter. Nor did he reply to my letter/dossier, even after a follow-up via my MP.
The Plot Thickens…
Dr Turner also supports the Canadian Criteria in principle. On 27/9/05 a person in Hants wrote to him saying:
“…We want: 1. The DoH to collate the national statistics relating to sufferers of ME, using the Neurological Canadian Guidelines, which are currently the best available and include severely affected housebound ME patients… The CFS (Fukuda) definition was developed for research purposes and has been proven to be inadequate for clinical purposes. The ever-broadening definition of CFS selects a mixed patient population and the focus on fatigue makes it difficult to distinguish the pathological fatigue of ME from ordinary fatigue or other fatiguing conditions…”
Dr Turner replied 5/10/05, saying he agreed with Point 1 of the letter.
A person from Kent wrote to Dr Turner 6/12/05. Having noted his endorsement of the Canadian Criteria, they said:
“…Are you aware that officials of the Sussex/Kent ME Society have championed and endorsed the new Kent ‘CFS/ME’ Clinics, whose referral criteria is so loosely based on the Fukuda definition that patients suffering from anything but the Canadian definition of ME will be the only beneficiaries of these centres? Could you confirm that you believe (1) the Canadian Criteria to be the most accurate description of ME and (2) the Fukuda criteria does not adequately describe the pattern of symptoms experienced by people with ME. Both definitions are enclosed…”
Dr Turner didn’t reply.
Once again, then, principle does not match practice. Dr Turner endorsed the Canadian Criteria but supports NHS Clinics which would exclude those meeting that very criteria.
If the clinics continue in their current form, attracting patients with a wide range of illnesses/conditions, results will be skewed and, if positively spun (most probably), used by the Government as an excuse not to research the physical causes of ME.
RiME will be sending the above information to members of the APPG, requesting there is a proper debate on the clinics at an APPG meeting, instead of the usual whitewash. Since many who have concerns cannot attend, due to the nature of the illness, RiME will ask that efforts are made to include some by proxy.
If you agree with these ideas, why not raise them with Dr Turner via your MP and please send us copies. If someone was to say ‘there have been few if any complaints’, that statement can then be rebutted.
Finally, the NHS Clinics Folder on the RiME Website has been updated and divided into 5 files: Kent Clinics, Barts CNCC, MEA Letters, AfME Letters, Letters to MPs.
In our MEA Letters Folder you will find a recent reply from Neil Riley, Chair of MEA Trustees, which is supportive of the clinics.
There are links to our Letters folder, which details people’s concerns regarding the Clinics.
RiME welcomes postage stamps.