Journal of IiMER Volume 13 Issue 1 Invest in ME Research The Human Rights Act 1998. If an insurance company ignores a client’s reasons for refusing CBT and/or graded exercise, a client could claim their ‘freedom of expression’ has been violated.2 The Human Rights Act 1998, European Convention for the Protection of Human Rights and Fundamental Freedoms, Section 1, Article 10, no.1 The guidelines should have had a significant increase in evidence-based assessment and treatments beyond the psychosocial model and CBT/GET treatments before it can be accepted as an independent, expert guideline for the treatment of ME/CFS. In 2007 the recommendation from NICE to use psychological therapies for treating ME contravened the human rights of patients. It was stated that by ignoring the serious issues with regard to CBT and GET the NICE guidelines would violate the right of clinicians and patients to the highest, safest standards of medical practice and care, amounting to a violation of their Human Rights, apart from major concerns about the efficacy of use of CBT or about the danger in the use of GET. There was no regulatory framework governing the development and use of CBT and GET thus leaving ME patients vulnerable to exploitation and abuse at the hands of the vagaries of power, politics and prejudice (which has been proven correct). In respect of informed consent for using these therapies the issue did not arise as there simply cannot be informed consent since there are important ethical, safety and regulatory questions arising from these treatments, to be addressed. It was hard to envisage any Independent authority clearing a drug for Human testing or use without ethical and safety issues, like those surrounding Psychological Therapy, being resolved. By ignoring these serious issues with regard to psychological therapy the NICE guidelines violated the right of clinicians and patients to the highest, safest standards of Medical practice and care, amounting to a violation of their Human Rights. This was a Human Rights issue. And what of today when one sees NICE retaining these harmful therapies as recommendations for treatment for ME despite being told they are harmful? Invest in ME Research (Charity Nr. 1153730) ME and the EU What has been causing billions of pounds of damage to the economies of Europe, and affects the lives of hundreds of thousands of people? Yes, ME - of course. However, rivalling it in recent years has been Brexit. Brexit may mean Brexit for some – but leaving the EU does nothing to help patients with ME. Research itself suffers due to the lack of EU funding available and UK researchers will be excluded from leading EU projects. We have already seen examples of how this is affecting research plans. We were hoping that one advantage of Brexit, at least for the remaining EU countries, was that other European healthcare systems would no longer pay any attention to UK’s NICE and its flawed guidelines for ME. Instead new policies could be formed. We may be being led headlong into the Brexit abyss but IiMER does not intend to break links with Europe. IiMER is part of the European ME Alliance (EMEA), now fifteen countries working together on ME and including groups and advocates with the same objectives. EMEA is a member of the European Federation of Neurological Associations (EFNA), with a member on the board representing ME, and works together to improve recognition of ME within Europe. What is clear is that the same problems that exist with ME in the UK also exist, to a greater or lesser extent, in all other European countries. One of IiMER's great supporters – Mike Harley – is running 28 EU marathons to support the charity in raising awareness and developing a Centre of investinme.org Page 35 of 52
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