A New Association for a New Approach
This Association is a social enterprise, not for profit organisation, to educate, inform and inspire those suffering or dealing with M.E, Chronic Fatigue Syndrome and Fibromyalgia. inspire may seem a strange word to use in relation to debilitating conditions However, It is run by a group of likeminded people who believe 100% in recovery. All of the team here have either recovered themselves, have cared for someone that is now fully well or spend their working lives helping people achieve recovery, which is exactly why we aim to inspire those who need our help.
Firstly let’s qualify the word recovery here. Our definition of recovery is where a person has been free from relapse. We believe there can be a detrimental impact on recovery time and rate when people are left too long struggling with their symptoms. Sufferers and family members searching for answers can quickly become exposed to depressing statistics about likelihood of recovery. You may have come across articles, and books that quote statistics on the likelihood of these conditions becoming long term and therefore much of the information out there focuses purely on symptom management.
The effect of this has, we believe, led to a perception that recovery is for the lucky few.
There is a reason why that has been the case. It is hard to access positive information because the legislation around the word ‘recovery’ is very strict and has to comply with the Advertising Standards Agency. So in many cases those who have recovered or those who work in the recovery field have to censor what they can say.
So what makes us different?
It is our aim to make a huge impact on the way M.E, CFS and Fibromyalgia is perceived.
Why do we need this organisation?
We also know from those who have walked this path of chronic exhaustive conditions that each and every one who has recovered understands that there is no magic bullet. People can quite understandably crave a cure and wait eagerly for a virus to be identified or a wonder drug to be found. In the meantime over 17 million people worldwide suffer and wait for their lives and health to return to normal. The M.E, CFS and Fibromyalgia Recovery Association believes that it is this wait or limbo state plus exposure to a belief that their condition may worsen, that may cause people to lose hope and faith in recovery. This can lead to years of long term illness, which may severely restrict the quality of life for them and their families. The Association’s mission is therefore to support individual’s recovery by presenting information that upholds the idea that recovery is very possible
The association is funding to research cures or vaccines. Our fundraising efforts will begin with providing a positive portal of information, that takes the mystery and fear away, creating a space where those who have recovered can inspire those who are searching for answers.
- Funds generated will enable us to:
- Provide access to positive recovery and carer support via a helpline
- Create an educational sharing portal for those who work in the field of health.
- Run annual educational conferences by leaders in the field of recovery
- Provide educational workshops for carers and recoverers at our annual conferences
- Run free helplines manned by those who have recovered or those who have cared for those who have
- Subsidise workshops for those affected.
- Pilot trials to show effectiveness of holistic approach
- To develop initiatives that encourage Government and NHS to shift the existing mind-set and implement a holistic approach to treatment and recovery
- To develop initiatives for prevention of these conditions
What are the aims of The M.E Recovery Association?
- To provide an informative website that forms a portal for recovery information.
- To connect sufferers, carers and health practitioners to those who have experienced M.E, Chronic Fatigue or Fibromyalgia and now feel fully well.
- To provide educational articles and newsletters that focus on recovery not symptom management.
- To provide a free helpline manned by those who have recovered or by those who cared for those who have.
- To deliver conferences by leaders in this field who will teach the ‘what happened' and the 'what to do' about it for sufferers, carers and those who treat these conditions.
- To work with the government and NHS bodies to implement step by step Recovery Plans.
- To run controlled trials to demonstrate effectiveness of holistic approaches on recovery rather than traditional allopathic intervention.
- To change the mind-set around recovery worldwide.
- To develop prevention and recovery initiatives.
The Association is supported by those who have personally experienced M.E but now feel fully recovered, along with those who have dedicated their working lives to helping others to recover. The Association has been awarded a small grant from The Big Lottery Fund.
We're here to help and hope you can join us
The ME Recovery Team