BRAME Statement about the Lightning Process

BRAME Statement about the Lightning Process


According to information received, today, the MEA and Tymes Trust will issue a joint statement later today opposing “unethical” proposed study of Lightning Process effect on children with ME.

BRAME has provided me with the following statement in response to the Bath/Bristol pilot study on Lightning Process for children aged 8 to 18 which does not yet have ethics approval.

Text below or open Word document here: BRAME Lightning Process Statement August 2010

For background to this issue:

BRAME Statement about the Lightning Process

We (BRAME) have grave concerns about lightening therapy and have voiced these concerns at many meetings, including with the Forward ME group when it was discussed there, and we will continue to do so.

BRAME has always worked/campaigned for ME to be recognised as a neurological illness, as classified by WHO, and have constantly worked to create a greater awareness and understanding of ME, for the complex and debilitating illness we all know it to be, and the impact it has on all those living with ME.

We (BRAME) have also been working hard, for the past 4 years, to try and get a national policy for ME adopted within the NHS, along with the use of the Canadian Clinical Guidelines on ME/CFS, and Canadian Clinical Diagnostic Criteria, to urgently address the paucity of biomedical services for people with ME within the NHS, and to address the national inequality of care. We have consistently raised this with PCTs, SHAs, the All Party Parliamentary Group on ME, various Ministers of Health, and even to Prime Ministers, at Number 10 itself, and within our responses to consultation documents.

Tanya was also patient representative on the CMO Working Group on ME/CFS and the NICE Guideline Development Group on ME/CFS, her response to these can be found on the BRAME website.

When we write to people who want information on BRAME and ME, we always state that:

“If any future health care professional is sceptical about ME, you could politely remind them that:

 Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are classified as neurological illnesses by WHO (ICD10:G93.3).

This WHO classification of ME and CFS is recognised by the Department of Health.

ME/CFS is included in the National Service Framework for Long Term Neurological Conditions.

ME/CFS is recognised as a neurological illness by the Royal College of General Practitioners with a Read Code of F286 (F denotes diseases of the nervous system).

The Canadian Clinical Guidelines on ME/CFS (2003) give consensus diagnostic and management advice which are accepted around the world.

The first 4 main points were reconfirmed by the Health Minister Ann Keen, at the APPG on ME meeting  on 22 January 2008, and by Lord Darzi, in his response to a formal question posed to him by our patron the Countess of Mar, in the House of Lords on 2 June 2008.”

We have also worked with the DWP for many years, raising the problems many people with ME have with the benefit system, and have campaigned for improved benefits, and on behalf of carers, and have been quoted in the government’s recently published white paper on Welfare Reform. We are extremely concerned over the proposals of the new coalition government on changes to benefits and the Work Capability Assessment and migration of people from IB, SDA and IS to the new ESA. We are also concerned over the proposed new medical assessment for those on DLA.

We have written to all the new Ministers but the responses we have received have not been encouraging. We will have to see if the new APPG on ME can be effective in supporting us by raising our grave concerns with the relevant Ministers. Sadly we lost in the election our own, very supportive, MP, Tony Wright, who was responsible for forming the APPG on ME in 1998, and was an officer of the group from 1998 to 2010.

We will continue to raise our concerns about the lightning process, and the need for a national policy on ME calling for biomedical services led by a specialist in ME of consultant level, to be set up nationwide based on the Canadian Guidelines/Diagnosis as set out in the BRAME Guide to Diagnosing, Managing and Caring for people who are Severely/Very Severely Affected by ME.

Tanya Harrison
Chairperson – BRAME
August 2010