25% M.E. Group response to draft TOR for APPG Inquiry into NHS service provision

Following enquiries, this morning, the 25% M.E. Group has confirmed that the Group did submit a response to the Draft Terms of Reference.  This is available at the foot of the website’s “What’s new” page and I’m publishing a copy, below.



25% ME Group Response to the draft Terms of Reference for the APPG Inquiry on NHS Service Provision For People with ME

14th November 2008

The 25% ME Group believe there should be a delay to this process to facilitate wider consultation amongst the ME community. We feel that :-

· There has not been proper scrutiny of the Terms of Reference to this Inquiry.

· More time should be allowed for this process to take place in a more realistic and generous timeframe.

· Consultation should be much wider in order to make sure other ME charities are fully involved in the process.

· The NICE Judicial Review is an important element to be considered, and we call for the process of the APPG Inquiry into NHS Services to be delayed until the case has been heard.

We would like to ask specifically why the WHO Classification (ICD G93.3) has not appeared in the APPG Inquiry Terms of Reference document? This is a vital point especially as the UK Government and NHS Policy accept this classification. We should therefore be emphasising this in the process.

We feel there is gross lack of emphasis on the need for research in finding biomedical markers and the emphasis on the requirement for seeking appropriate treatment, testing and accessibility for ME sufferers, especially in relation to the severely affected.

As others have pointed out the use of the term “Encephalopathy” within the Terms of Reference is not appropriate and is not validated by any WHO classification, nor is it officially recognised by the Government or the NHS.

There seems to be an almost afterthought of how the whole question of the severely affected will “fit in” within the Terms of Reference rather than highlighting the seriousness of their condition or examining ways to provide real services for this severely ill group of people. The emphasis seems to relate more to how they can be included and if, and how, funding will be provided.

We find it very unhelpful for the Secretariat of the APPG to state that “no wider consultation (of the draft) was envisaged.” We also find the mention of the possibility of “minor amendments”  to the draft to be completely inadequate and call for a delay in drawing up the Terms of the document in order to enable wider consultation within the ME community.

We also consider that the process should be delayed until the Judicial Review of NICE CFS/ME Guidelines has been completed. It will then be more appropriate for the APPG Inquiry into NHS Service Provision to proceed.

Given the fact that one of the aims of the process is to identify the lack of biomedical research and services, treatments and testing appropriate to the needs of neurological ME sufferers (including the severely affected) it is very debatable whether the Terms of Reference will be effective in their present format, since they do not solely relate to patients with neurological ME but instead will include service provision for patients with a range of condition including chronic fatigue; chronic fatigue syndrome and neurological ME (again including the severely affected).

We would specifically like to comment upon the following contained within page 1 of the draft document:-

1. First para under ‘AIM’, p1: We agree the inclusion of the term ‘Encephalopathy’ is inappropriate and ill-advised – this is not listed in ICD-10 or anywhere else. We should stick to the correct term ‘Myalgic Encephalomyelitis’.

2. Last bullet point, p1: This mentions specifically an inquiry into what funding SHAs and PCTs would need to implement the NICE guideline, which implicitly means the implementation of CBT + GET and virtually no other treatments or alternative management regimes, a key issue why the guideline is being contested in a Judicial Review.

3. First bullet point, p2: This mentions ‘Plans for the establishment of new clinical services where no such service currently exists’, but does not stipulate what these clinical services should comprise – one can only presume these implicitly comprise the same CBT + GET management strategies recommended in the NICE guideline.

4. Third bullet point under ‘It will also consider’, p2: ‘how well health professionals in primary care, …. provide information about the range of interventions and symptom management strategies available’ … – this would almost exclusively cover only CBT + GET.

5. Fourth bullet point under ‘It will also consider’, p2: this talks about ‘appropriate professional training in the range of interventions and symptom management strategies available’ – we assume this again relates specifically to the use of CBT/GET.

6. Fifth bullet point under ‘It will also consider’, p2: it is mentioned here whether health professionals in primary care, …. provide adequate information on the possible causes, nature and course of ME’. – This is curious, particularly in relation to the ’causes’, which the NICE guideline (the implementation of which is a key point of investigation in this inquiry) in one part state specifically are not important and should not be investigated, and then in another part it is stated that GPs and clinicians should discuss them with patients. This is one of many flaws in the NICE guideline and a point seemingly missed by the people drawing up the Terms of Reference for this proposed Inquiry. It definitely needs clarification.

7. First para, p3: This mentions ‘domiciliary services (including specialist assessment): What exactly is meant by this? Presumably this would apply particularly to the severely affected, for whom the NICE Guideline so generously suggests that help for these patients should be individually tailored to the needs and capacities of the individual, maybe by telephone instructions or by e-mail!

In conclusion we feel the Terms of Reference are inadequate at present in terms of truly representing neurological ME and we feel it is imperative that there is wider consultation at this stage in order that we do not validate the existing status quo of NHS services provision for this condition.



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