MPs debate fibromyalgia after Chesterfield woman's petition

https://www.bbc.co.uk/news/uk-england-derbyshire-46880547

A debate has been held in parliament about a chronic pain condition after a petition attracted more than 115,000 signatures.

Toby Perkins, MP for Chesterfield, organised the debate along with constituent and fibromyalgia campaigner Adrienne Lakin.

She launched the petition calling for more funding and support for sufferers.

More at link above.

 

Transcript of the debate, https://www.theyworkforyou.com/whall/?id=2019-01-15a.293.1

 

I searched for the actual petition but couldn't find it. I was curious to see what it said, because ME petitions on the 10 Downing Street site have reached much lower number of signatories. Perhaps we could learn something from the approach.

 

https://www.change.org/p/uk-parliament-make-fibromyalgia-a-disability

 

Thanks, @Andy.

That was interesting. The message contains errors/typos, and is confusingly laid out, with a picture of text at the top that stops partway down, before you get into the actual text of the petition. But that clearly didn't stop it being successful. It's quite a simple message - it points out that PWF have a hard time with the condition and a lack of medical help or other support; that the US leads in research and treatment and that the UK lag behind; and that parliament should recognise fibro as a disability and that there should be better treatment and support.

A lot of our ME petitions attack very specific targets and I wonder if that makes it harder for the general population to get behind them in large numbers.

Oddly, this petition is on Change.org rather than the 10 Downing Street site and yet its success has triggered a debate in parliament. I'm a bit confused by that.

 

Luke Pollard Labour/Co-operative, Plymouth, Sutton and Devonport
"The real-life stories I have heard from people in Plymouth were about not just their diagnosis and the health system, but how the DWP treated them, especially in their healthcare assessments.

Our assessment system does not adequately understand the real-life experiences of many people with hidden illnesses, in particular fibromyalgia and ME, but also many more besides. It really needs to, because they are precisely the people who need support from our welfare system, but are not getting it."

"One thing that all hon. Members can do is tackle the stigma around fibromyalgia,
as we have done for ME and many other hidden illnesses. To do that, we need to talk about it, give a platform to those people who suffer from it, and recognise that we will not receive mass lobbies in Parliament about it, simply because coming to London—especially from Plymouth and further away—takes a lot of energy and knocks people out for weeks afterwards. We need to recognise that it is real and do something about it."

(A number of the MPs in attendance have wives with FM).

(on a non-related issue; shame that the website theyworkforyou.com uses the link to wikipedia for ME)

 

I don't think it directly triggered a debate as such, but that Toby Perkins MP went to the backbench business committee (as Carol Monaghan did) to get the Westminster hall debate, using the petition as evidence of widespread support for a debate.

I'm still a bit confused by the demand, that fibromyalgia be recognised as a disability. I thought any significant long-term impairment already was under the Equality Act 2010, but on the petitioner's website here it states:

Could anyone with greater knowledge of this bit of legislation explain this to me?
(Edited for clarity)

 

ME debate is 24th January AFME tweeted, not long to prepare and what are the aims. I will be upfront , I’m concerned it will be a debate without aims..

 

This thread is about the Fibromyalgia debate that took place yesterday, I'd assume you probably meant to post in response to the news here, https://s4me.info/threads/carol-mon...-commons-main-chamber.6865/page-5#post-136369

 

I didn’t actually Andy, I couldn’t find that and thought it had relevance here as I was reading the FM debate transcript at the time. I wasn’t starting or continuing a thread just trying to give the quick heads up to others as time ahead is so short. I can delete it if it’s being discussed in a better place.