Me

Me

Thursday, 13 February 2014

#Fibromyalgia & #M.E A Call to Action Update

A Lot can happen in 24 hours

Yesterday I wrote an angry scared post about the possibility that the World Health Organisation (WHO)
might reclassify both Fibromyalgia and M.E as psychological and behavioural disorders.

Events moved fast, I tweeted my outrage, it got retweeted lots of people asked WHO if it was true, they said NO its not they had no plans to change the classifications. I learnt a bit about an amazing website focusing on M.E. The site will no longer be updated, but will remain http://dxrevisionwatch.com/

I read two fantastic blogs written by women who like me who are concerned that both conditions are vulnerable to misinterpretation
.
M.E & Fibro could be reclassified by WHO (updated)
Fibro and M.E Misunderstood disorders

I had replies and conversations, today there is a basic plan of sorts so the Call to Action stands.

Why?
The WHO have said "There are not plans to reclassify either Fibromyalgia or M.E" that potentially means the classifications will remain incorrect, they do not reflect the latest research breakthroughs, and in the case of Fibro hasn't really changed since it was first classified in 1992!!

It matters because the classification ultimately influences:
How our health care treatment is determined,
How easy it is to get our pensions if they released early if we have to retire or get sacked due to ill health,
How big insurance payouts are if people have a whiplash type injury that isnt thier fault eg a car accident and go onto develop fibro
How the next generation of medics are trained
Crucially builds up funding and momentum for research

That is why its time to find our voice, many of us learnt just how powerful we are when ordinary people work together to push the establishment, I was proud to be part of the Spartacus Network Can we do something similar within the world health community? why not I say

A facebook group has been created to let anyone interested come together - I need a few people who will help me develop the campaign and tools. I'm hoping lots of people will use them and take part - we have to be our own advocates. FibroME ForAction Community (facebook group)

For now its on Facebook but who knows what it will be next week :) 

Basically the plan is to - Work to get the classification updated and changed to reflect the research.
Specifically:
WHO
NICE here in the UK.

This isnt a UK issue its a world issue, I know there is lots going on, many groups and charities are working to get research recognised. There are lots of individuals who are tired and worn out,  so maybe its time to be our own advocates and build on their work and develop our own. Its not a competition, I am just one chronically sick woman who isn't willing to wait for others to advocate for me.

I had no idea yesterday what I had started, but I feel a little less angry and a little more determined - Please Join Me 



4 comments:

  1. Lots in common between Fibro and ME. I have ME and also have a blog.

    ReplyDelete
    Replies
    1. Hi Sally,

      I think you have found us on facebook :) I think there is too and it seems many like me are fed up with poor healthcare and treatment - im sure if enough of us band together we can make a big noise x

      Delete
  2. Congratulations, I have nominated your blog to receive an ME & CFS & FMS BLOGGER AWARD. Please visit
    http://sallyjustme.blogspot.co.uk/2014/02/my-nominations-for-first-me-cfs-fms.html
    to collect your Award

    ReplyDelete

Happy to have thoughtful, funny or imformative comments..abusive crap will be deleted