UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

Relative’s suffering triggered Sajid Javid’s ME crusade

"Sajid Javid’s radical new approach to the debilitating condition myalgic encephalomyelitis was shaped by his experience with a family member.

The health secretary told The Times yesterday that a close relative suffered with ME, which affects at least 250,000 people in the UK and for which there is no diagnostic test, universally effective treatments or cure.

“ME affects the lives of children and adults across the country and I know from my own family’s experience that fluctuating symptoms can make it incredibly difficult to take part in everyday activities, enjoy time with friends and loved ones, access services and go to work or school,” Javid said."

https://www.thetimes.co.uk/article/relatives-suffering-triggered-sajid-javids-me-crusade-6th2nv6wl

Again link is open access to me but may be a paywall to others (I am not a Times subscriber so not sure why I'm able to access recent Times articles when others can't).

 

I think is is great what's happening in the UK, but it looks like these things still also need some luck to happen, someone in a key position having a close relative with the disease. I don't want to detract from anyone's work at all who has obviously put plenty of effort into this, but I think it would be much better if decision-makers didn't need this extra "motivation" and would choose to change things for ME/CFS patients simply because that is the right thing to do and they understand that.

I feel if this, a close experience with ME/CFS is necessary for things to change, the rest of the world still has a loooooong way to go, too long. So we really need a biomarker and I hope that the research the UK is going to fund now will contribute to that.

 

I thought that was the only explanation.

Yup. Same thing with doctors; when I was first assessed for a disability allowance 20-odd years ago, I got a fantastic retired GP. Really clued-up, really warm and funny. He clearly knew my own GP from when he was in practice, so I asked when I next had a consultation—apparently the assessor's niece had severe ME. Needless to say I got my award, but it was pure luck and it absolutely shouldn't work like that.

 

I feel like something of a sea change in attitudes is in motion globally, largely due to recognition of longCOVID across the world.

Fauci's recognition of the relationship between longCOVID and ME certainly helped in the US which has influence elsewhere and I think this recognition of the reality of the condition in the UK will help too and I am very grateful that Sajid Javid has an understanding of what is going on, though of course sorry for whoever it is he knows with ME. Unfortunately there are a lot of people with it so it is inevitable that people who make decisions will have some experience of it.

What makes the difference for us is when people feel able to respond compassionately instead of being expediently dismissive, which is too easy to do with PWME due to our defining lack of energy, we are easy targets. Sajid Javid apparently does feel able to act compassionately which is a credit to him and I am sure it will make a difference. I also hope he will get the support he needs in doing so, which I think he will as there are some laudable parliamentarians who will back him in this who also have experience of ME. I think ME is one of those issues of humanity which has the ability to unite politicians across all parties.

 

I agree. I know many on this forum have tried to interest their MP without success but with persistence I think much can be achieved. Of course persistence takes energy which is what most pwme do not have. Sometimes I need to be involved via dictation to Mr B because I simply can't write.

For those who can, I think pursuing political connections is worthwhile. My MP ( Sir Ed Davey) has written emails to Lord Kamall ( who announced Sajiv Javid's statement), attaching mine, received replies and sent them on to me for my comments. I will respond to the latest as soon as I gather the energy. There is plenty to say. Research funding.

 

Sadly predictable, there's almost always a personal connection.

Now I hope that Javid has the courage to stand up to what's about to happen, for his niece(?)'s sake. Because he will see spitting rage and foaming at the mouth from influential doctors who will spew pseudoscience at him like it's as revolutionary as antibiotics. It would be very useful to be able to bring to his attention, and the staff who will do most of the work, about how the threats were debunked, since turned into "we're being trolled on the Internet". Because we will be made up to be horrible people who need to be managed, not cared for.

I've been saying this for a while, but the myths of psychosomatic ideology are way more entrenched that some people think. This is really not at all limited to our BPS ideologues, the rest of medicine has fully bought the onion.

More than the demonizing campaigns in the media, more than manipulating processes and, frankly, essentially de-scientificizing (I have no idea how to turn this into a proper verb) medicine, this is how it plays out in most cases, just small bits of intimidation, bullying enforced by cultural norms, dirty looks and admonishing about people not respecting taboos:

https://twitter.com/user/status/1525269776431362048

 

Javid's statement is very encouraging. I feel real hope in my heart that things will change, the healthcare system will understand our needs as patients, and the MRC will fund some serious medical research at last (just like I did in 2002 when Liam Donaldson said we had been in the wilderness too long, from today all that changes, blah blah, blah - 20 years ago).

 

It didn't work. I would have to sign up for a free trial...maybe I will reply to his Tweet and ask for a non-paywalled link

 

https://www.thetimes.co.uk/article/...8J8WAg0FhsCf0h7kNSHhapBwAlGpRq9tM5G3rGq71DaV8 got it!

 

https://www.thetimes.co.uk/article/...tion-for-patients-debilitated-by-me-9bkq6qf5g

 

slightly different article but covers similar ground & reveals he has a relative with ME. This is the link provided by MEA facebook page & i can read the whole article paywall seems to be down
Relative’s suffering triggered Sajid Javid’s ME crusade | The Times

quote from Dr Shepherd from the MEA in a comment below the story (responding to natural scepticism of other posters

 

also here a link that i can read full version of original article Barry posted in OP

from MEA website
Sajid Javid promises radical action for patients debilitated by ME | News | The Times

will delete if people cant access, i dont know why it workedfor me to read the full article i cant normally behind paywall

 

It sounds encouraging, i just hope & pray that the usual 'experts' ie Wessely et al, are not the ones called to sit at any round table (or calling themselves), thats a danger i'm concerned about. We need sensible people who understand the issues at that meeting, there's a danger it could be (at best) a waste of time if we have too much BPS (or indeed ill-evidenced biomedical) blather.

I hope he will call on @Jonathan Edwards although i'm not sure if he is able to participate at the moment.

 

It is clear that they will continue to do their best to thwart any progress.

 

Merged thread

Independent (UK National Newspaper) article by daughter of ME sufferer on Sajid Javid announcement

https://www.independent.co.uk/voice...-syndrome-parenting-nhs-funding-b2078537.html


If asked to register you should be able to click 'I'll try later' to read without paying.

 

Not sure if this is the right place, but for those on Twitter - I just Tweeted @ Andrew Gregory (Health Editor at The Guardian) a friendly polite tweet to ask if the Guardian might cover the Sajid Javid announcement, as they've been silent on it so far. Others might want to do the same..

 

The question is, what measures should be taken to ensure continuity of support? It cannot be long until the next cabinet reshuffle. There may be some in higher ranking posts who may not keep them. The civil service will probably keep on doing what it has always done, until someone else is in post The minister may pull the lever, but is it connected to anything?

 

I don't tweet unfortunately but do subscribe to the Guardian. Have been feeling very cross at their lack of coverage. Once again it looks as if I will be changing my subscription back to the Times with a letter to the Guardian saying this. But where do I get the energy?

I don't know why they have so consistently ignored ME or gone BPS. Only 2 weeks ago they carried a letter from White, Chalder and Sharp. Good luck @josepdelafuente. I hope they can be prompted to do the decent thing.

We must remember George Monbiot's comment article of about a year ago however which was very much in our favour. If I find the link I'll add it later.


eta:covers long covid then goes on to ME. https://www.theguardian.com/comment...g-covid-when-will-ministers-take-it-seriously