I thank my hon. Friend Toby Perkins who has become a real hero for many people with fibromyalgia, because he has given them a voice. Ahead of the debate, I posted on Facebook to ask people to share their feelings and experiences with the people of Plymouth, because there are many fibromyalgia sufferers there. The number of people who have got in touch is extraordinary. Among those people, the common view is that they want to be believed and supported. My hon. Friend’s work has done much towards that. The suggestion of Sir David Amess about a fibromyalgia champion is a good one that has cross-party support.
It is important to say, and to say clearly, that fibromyalgia is real, that the pain is real, and that the people who suffer from it should be believed. That should not be controversial, but I am afraid it still is. The campaign to have it recognised as a disability is good and important. It would make such a difference to many people’s lives to have that recognition.
Sarah wrote to me to say that,
“the pain is chronic and never goes away…Physically it started with the horrendous pain, constant viral infections, walking along and suddenly my legs would give way and I would end up lying in the road, being unable to change the gears in my car suddenly as I didn’t have any feeling and being unable to function due to feeling so fatigued and having zero energy.”
Among the people who got in touch, it was common to talk about how fibromyalgia rips away the ability to do things that many of us take for granted and how, in many cases, they did not understand why that happened and could not explain it clearly to people. The delays in diagnosis contribute to that suffering.
Fibromyalgia should be classified as a disability. That is a necessary step to dealing with the horrendous stigma around the disease and to directing the attention that people with fibromyalgia need to get the support they deserve.
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.