Newry and Mourne ME/Fibromyalgia Support Group have made Northern Ireland a busy stopping-off point for ME/CFS researchers and clinicians in the past few years. Now the group are stretching their political muscles locally.
They’ve launched a petition to Health Minister Edwin Poots that calls for a whole new approach to ME/FM treatment in the Province – adoption of the Canadian clinical guidelines for M.E, active promotion of the illnesses as physical in nature and ambitiously daring to urge the setting up of a centre for clinical excellence.
Up until today, about 500 people had signed the petition and more signatures are wanted. The petition can be found at: https://secure.avaaz.org/en/petition/Minister_Edwin_Poots_Fully_Adopt_CCC_for_ME_in_NIreland/?cHCXadb It will stay open to the second half of May.
The group say that a large number of international M.E. experts urged the US Government to immediately adopt the Canadian guidelines last September.They say in effect that, if the guidelines are good enough for the trusted experts, then they’re good enough for Northern Ireland.
The petition explains:
“This move would give local doctors the best means to accurately identify patients with ME and this could potentially lead to better prospects for patient recovery and hopefully an earlier return to a productive life.
“Unfortunately, current NICE guidelines recommend that ME patients should have Graded Exercise Therapy (GET) to help them recover. GET is now known to be harmful for ME patients.
“Adopting the CCC would allow Northern Ireland to take the lead in developing a more sympathetic and paced approach to the treatment of ME.”
An estimated 7,000 people have ME/CFS in Northern Ireland and the petition says they are unable to access specialist NHS medical care.
“Many of those have lost their livelihood and active lives. Most would eagerly return to work if their condition could be better managed or improved.”
Northern Ireland has become a major stopping-off point for researchers and clinicians like Dr Derek Enlander, Professor Mark VanNess, Dr Judy Mikovits and Dr Charles Shepherd who in recent years have spoken at events organised by the Newry and Mourne Group. They’re always guaranteed a friendly welcome.
But the gloves have now come off as they face up to local politicians. It’s not talk the group want, but real action and dedicated resources!