It was wonderful to see Sajid Javid MP, Secretary of State for Health and Social Care, give a speech during yesterday's M.E APPG.
We are hopeful that his personal interest in M.E will lead to 'top-down' change for M.E patients living in the UK (that will have ripple effects worldwide).
BUT -
Please remember that he is one of the people who we are petitioning/campaigning with our #ShakeItUP campaign. So far, he has declined to consider our request for a reporting system to report harms from non-pharmaceutical 'treatments' because 'NICE no longer recommends CBT/GET'. In recent weeks NICE has acknowledged that not enough medics are adhering to the guideline. Surely this proves the need for this reporting system?
Entirely hypothetical situation -
NICE's guideline is adopted by increasing numbers of medics (great) but then M.E becomes too expensive for the Government to fund adequately. Psychologists push the notion that M.E is psychosomatic AGAIN and CBT/GET is reintroduced officially. The reporting system NOW will prevent this from happening as patients will have a way to officially and centrally report harms. Quantitative data will PROVE that increased exertion harms.
We need this.
Other patient communities also need this.