25% M.E. Group’s responses for meeting with Countess of Mar

Ed: Note: There seems to be some variance between the organisations invited to attend the Countess of Mar’s meeting on 8 October as regards whether they prepared written responses in advance of this meeting to a series of questions on the Agenda.

I am advised that the 25% M.E. Group did prepare a written submission and copies were distributed to all those who attended the meeting.  A copy is published, below.

The 25% M.E. Group’s response sheet is signed “DJ” and I presume that Doris Jones attended the meeting as the representative for the 25% M.E. Group, though this has yet to be confirmed.

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NOTES FOR CONSIDERATION TO BE BROUGHT UP AT THE 8.10.2008 MEETING WITH THE COUNTESS OF MAR

Main Aims and Objectives of the 25% ME Group?

a) Support severely affected members as well as possible with information and practical advice when needed.

b) Endeavour to secure appropriate treatment for severely affected members – CBT +/or GET are not meeting the needs of these patients.

c) Participate in talks, discussions and negotiations with governmental and other organisations in endeavours to secure a better deal for the severely affected, in relation to treatment, necessary social support and appropriate benefits.

d) Help to inform GPs and other healthcare professionals of the real nature of ME and the desperate need for proper help for patients.

What have been the obstacles to progress?

a) New Guidelines issued in 2007 by the DWP – Patients experience more problems getting necessary benefits.

b) The NICE Guideline – Patients report increasing problems in getting appropriate medical attention and care since the publication of this guideline.

c) The NHS Plus guideline on Occupational Aspects of the Management of CFS – A National Guideline – this has now been amended and hopefully will be more helpful for patients.

d) Disunity among UK ME/CFS Charities – some endorse the NICE Guideline, CBT and/or GET are accepted as being helpful to some patients with mild or moderate ME/CFS, but the severely affected find these approaches useless (CBT) and GET potentially harmful.

What are the solutions?

a) Put pressure on organisations like NICE to rewrite guideline or make necessary and appropriate amendments – support the applied for Judicial Review.

b) Put pressure on the DWP for necessary amendments to their new guidelines on CFS/ME.

It is important to bear in mind that ME/CFS is listed as a neurological disease not only in the WHO ICD-10 codes under G93.3, but it is also listed in the UK’s National Service Framework for longterm chronic conditions under neurological diseases, and it is listed as a neurological condition in the UK’s Read Code (under F286), which is used by GPs. Organisations like NICE, the DWP and others should be asked why they seemingly insist on maintaining an ambiguous stance on this issue.

How are the solutions to become actions?

a) It may be necessary to create or form a united UK ME/CFS (as opposed to CFS/ME) charity or Association which may be in a better position to put pressure on these organisations to stress the difference between the neurological disease ME/PVFS/CFS (as listed in ICD10-G93.3) as opposed to states of chronic fatigue, which come under various other headings and are deemed to be mental or behavioural disorders (such as Neurasthenia under F48) in the WHO ICD Codes.

b) Stress the different approach to diagnosis and treatment which is needed in these diseases and conditions. – CBT +/or GET may be beneficial to those patients who suffer from general chronic fatigue, but not those who suffer from the neurological disease ME/CFS (as most clearly defined in the 2003 Canadian guideline).

c) Achieve amendment of existing inappropriate / deficient guidelines (NICE + DWP).

d) Press the MRC and DoH/NHS for urgently needed funding to look into causes of ME/PVFS/CFS.

6.10.2008 DJ.

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