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

[Robert 1973]

Huge thanks to Sean O’Neill for doing this, and to Woman’s Hour and everyone who helped.

Charles Shepherd was excellent too, talking about the new NICE guideline and implementation, and the changed view from psychosomatic to physical disease etc. It was a very good broadcast from both.

Overall I thought the broadcast was very good and Charles said some helpful things, but I would have liked him to have emphasised the need for a huge increase in investment in high quality research to develop diagnostic tests and effective treatments.

Charles said: “We've got a NICE guideline which has sat there now for six months. We want to see services implemented, new services set up where people can be sent for hospital-based help with their diagnosis and their management.”

I don’t disagree with this, but these type of services alone are nowhere near enough when there are no effective treatments, and I wish he had made that clear. I hope this will be emphasised by charities and in the APPG Rethinking ME report.

I also wish we could get away from the “it’s not ‘all in the mind’” arguments which so often end up being the subject of media discussions and take us nowhere very useful.

 

[JemPD]

Charles said: “We've got a NICE guideline which has sat there now for six months. We want to see services implemented, new services set up where people can be sent for hospital-based help with their diagnosis and their management.”

yes i often wonder when he says these things what 'help' he thinks is going to be given with management
He and Sean O'Neill very grateful to them

 

[FMMM1]

Maybe a breach of BBC editorial guidelines:

Editorial Guidelines

1.3 The public interest

"The BBC’s Mission [4] specifies that we must ‘act in the public interest’. It is in the public interest to fulfil our mission to produce output to inform, educate and entertain. There is no single definition of public interest, but it includes freedom of expression; providing information that assists people to better comprehend or make decisions on matters of public importance; preventing people being misled by the statements or actions of individuals or organisations. The public interest is also served in exposing or detecting crime or significantly anti-social behaviour and by exposing corruption, injustice, significant incompetence or negligence."

my bold^

Good point. I asked a neighbour, who worked for the BBC at one point, about the Newsnight program (Paul Garner et al - still disappointed by that) and he told me to write in and complain ---- might be an idea here. After all, the person who called in can hardly point to any evidence that they've been cured, or if they have that it was related to alternative medicine!
Corresponds to Garner's claims on Newsnight then!

 

[kilfinnan]

It's of much greater concern that there is nothing on BBC news website regarding the HS statement nor anything on Rethinking ME. I may be wrong but if that's the case it is outrageous. What areBBC health news desk thinking?

They must have received a press statement especially the launch of Rethinking ME. It must have been spiked. Why?

Of course I may have missed something but I generally read the health news most days and haven't seen anything on either the statement nor the the launch. If so questions need to be asked of the BBC Health editor.

 

[Daisymay]

It's of much greater concern that there is nothing on BBC news website regarding the HS statement nor anything on Rethinking ME. I may be wrong but if that's the case it is outrageous. What areBBC health news desk thinking?

They must have received a press statement especially the launch of Rethinking ME. It must have been spiked. Why?

Of course I may have missed something but I generally read the health news most days and haven't seen anything on either the statement nor the the launch. If so questions need to be asked of the BBC Health editor.

Yes and why not a press release from Science Media Centre I wonder!

 

[John Mac]

Yes and why not a press release from Science Media Centre I wonder!

Maybe they view Sajid Javid as a dangerous ME activist

 

[Wyva]

The BMJ: Health secretary pledges more ME/CFS research as he reveals that relative has condition

by Ingrid Torjesen

Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said.

Speaking at the launch of a report by the All Party Parliamentary Group on Myalgic Encephalomyelitis on 25 May,1 Sajid Javid revealed that one of his own relatives had had her life severely affected by ME, and he pledged to tackle the lack of research on the condition. He will co-chair a round table of international experts next month to help set this research strategy.2​

It's paywalled but maybe someone else can read it.

Edit: That roundtable of international experts actually includes patients too. I don't know if it was left out deliberately or not, since I can't read the whole article. Just something I noticed.

 

[MeSci]

It's of much greater concern that there is nothing on BBC news website regarding the HS statement nor anything on Rethinking ME. I may be wrong but if that's the case it is outrageous. What areBBC health news desk thinking?

They must have received a press statement especially the launch of Rethinking ME. It must have been spiked. Why?

Of course I may have missed something but I generally read the health news most days and haven't seen anything on either the statement nor the the launch. If so questions need to be asked of the BBC Health editor.

The BBC - radio at least - has an extremely obsessive focus on exercise, etc. I think that it is excessively influenced by the psycho crowd.

 

[Trish]

I don't think we have a link to this Times article by Sean O'Neill from yesterday with a report on the launch of the APPG report:
https://www.thetimes.co.uk/article/...MX4tcXZriEi7srRiJLcUj3dNJ9iLnVGadUDTOA_SJCS74

Sajid Javid rethinking ME after young relative’s battles

Sajid Javid said that the health service had failed in its attitude towards treatment of the illness but pledged to lead a cross-government initiative on ME. This would involve healthcare, education and the benefits system, while placing a new emphasis on research into the poorly understood condition. He will convene a panel next month with researchers from around the world in an effort to encourage new treatments.

Speaking at the launch of Rethinking ME, an all-party parliamentary group report, the health secretary disclosed that a close family member had been struggling with the chronic illness for six years. At the age of 12, his relative had gone within weeks from being an active girl who captained her school netball team to one who struggled with fatigue and low energy. Her schoolwork had suffered and doctors had been unable to explain her illness or offer any treatment.
[...]

 

[CRG]

It's of much greater concern that there is nothing on BBC news website regarding the HS statement nor anything on Rethinking ME. I may be wrong but if that's the case it is outrageous. What areBBC health news desk thinking?

They must have received a press statement especially the launch of Rethinking ME. It must have been spiked. Why?

Of course I may have missed something but I generally read the health news most days and haven't seen anything on either the statement nor the the launch. If so questions need to be asked of the BBC Health editor.

Other than The Times I can't see any news org report on Rethinking ME listed in the top 20 results from Google or Bing. There are other things going on in Parliament that are concerning all news organisations far more than just another APPG report, even if that report is supported by the Health Secretary.

 

[Trish]

Yes, I think we need to realise that this is big news for us, but for the media and general public, it's simply not news.

 

[rvallee]

Yes, I think we need to realise that this is big news for us, but for the media and general public, it's simply not news.

Should be, though. I think we're too used to being discriminated, but "healthcare services have been denying a serious condition for decades and coercing patients into harmful mistreatment they have objected to the whole time" is a serious damn news story when it involves millions all over the world.

Even if just UK-centric, there has been so much high-profile vilification, official lies that have been debunked, to make it a big story all by itself. We were proven right at every turn, in effect debunking all the claims of "harassment" since they all worked from the premise that we were wrong.

What this means is that reality hasn't been accepted yet, the real story. As long as the NHS maintains a state of hostility to it, rejects the truth, the real story isn't coming out.

 

[CRG]

Yes, I think we need to realise that this is big news for us, but for the media and general public, it's simply not news.

With Parliament based events it's always a matter of luck whether it's a quiet political newsday and the event therefore get lots of attention whatever it is about, or there are competing stories that bury it no matter how significant it might be.

The APPG did an excellent job to pull everything together - and I'm guessing they actually chose the day - last day before the Whitsun Parliamentary break, which should have been a quietish day, and provided a good chance of getting journalist attention.

I assume that the event was weeks in the planning and the APPG could have had no foreknowledge that the Gray report would be published on Wednesday (the author only knew days ago) or that the Chancellor would be announcing an unprecedented and highly controversial £billion cost of living amelioration on the day of the APPG event - likely the Government only decided days before. It was all just bad luck, what might have got coverage in multiple papers and some Radio and TV attention was simply squeezed out by issues that greatly exercise the interest of the mass of the UK population.

For those outside the UK - this week has seen major political drama:

Gray Report = https://www.theguardian.com/politic...-report-full-breakdown-findings-no-10-parties

Chancellor unveils £650 support payment and windfall tax in cost of living plan = https://inews.co.uk/news/politics/r...ving-windfall-tax-energy-bills-rebate-1651885

 

[Binkie4]

I don't think we have a link to this Times article by Sean O'Neill from yesterday with a report on the launch of the APPG report:
https://www.thetimes.co.uk/article/...MX4tcXZriEi7srRiJLcUj3dNJ9iLnVGadUDTOA_SJCS74

Sajid Javid rethinking ME after young relative’s battles

@Trish- I think this is the article we have been discussing in the APPG thread.

https://www.s4me.info/threads/uk-al...-me-news-2020-onward.16996/page-7#post-420857

Responses still trickling in - up to 257.

 

[Trish]

Oops, thanks Binkie. I can't keep up.

 

[bobbler]

It's of much greater concern that there is nothing on BBC news website regarding the HS statement nor anything on Rethinking ME. I may be wrong but if that's the case it is outrageous. What areBBC health news desk thinking?

They must have received a press statement especially the launch of Rethinking ME. It must have been spiked. Why?

Of course I may have missed something but I generally read the health news most days and haven't seen anything on either the statement nor the the launch. If so questions need to be asked of the BBC Health editor.

I agree on the BBC and have found their seemingly implicit attitude obvious.

I have just done a check though and it seems that basically none of the big papers other than the times covered this. A few more covered the bit on 13th May when he promised radical action.

I half feel silly for getting excited - like when there was an article once about a year ago that seemed to have been sent as a link to the MEA but wasn't on the main page to click through so only had ME people on it and you feel I don't know what when you realise.

Hopefully the issue is that things like reports and green papers rarely are of interest to people 'outside the sector', if I'm thinking of non-ME comparators. So .. if they can find a way/new angle to make something more newsworthy out of the report maybe all the better. As many with interest would say it is a lot of reading to get a gist of intention rather than hard-hitting one line actions. The BBC on the other hand has little excuse given its remit it feels.

THere did seem to be a news article in one newspaper about a girl in Leeds who is now very poorly after waiting too long in A&E etc. So maybe a few articles focusing on the 'why x needs to change' live issues might be something they can make news items from to dovetail coverage into implementation? Stats even on things like % misdiagnosis (I'm not being very creative on what stats but hopefully there is a gist here), % don't feel safe with doctors or anything like that, % of depts that are wrongly located or wrong staff 'x number are instead putting up job descriptions for physios to do CBT in the last 4months'

 

[SNT Gatchaman]

 

[kilfinnan]

The BBC on the other hand has little excuse given its remit it feels.

There has to be no excuse given it's remit.

Commercial newspapers have pressures of space, understaffed etc. The BBC can have no excuse for not following up, at least on the Health Section, and in my opinion, published on the main UK page. There must have been a conscious decision by an editor to spike a press release, and not 'put it in the diary'. The DoH must issue press releases.

Is it about people and the circles in which they orbit. Maybe they are understaffed.

I feel it's appropriate to formally ask the the Health Editor questions. No matter how well written 'Wee Mrs McGlumpher from Dundee' won't get an answer.

Would Doctors For ME not be in a position to ask.

 

[CRG]

There has to be no excuse given it's remit.

Commercial newspapers have pressures of space, understaffed etc. The BBC can have no excuse for not following up, at least on the Health Section, and in my opinion, published on the main UK page. There must have been a conscious decision by an editor to spike a press release, and not 'put it in the diary'. The DoH must issue press releases.

Is it about people and the circles in which they orbit. Maybe they are understaffed.

I feel it's appropriate to formally ask the the Health Editor questions. No matter how well written 'Wee Mrs McGlumpher from Dundee' won't get an answer.

Would Doctors For ME not be in a position to ask.

The BBC's remit doesn't include having to cover "everything" - anyone wanting to complain on that basis will need to get to grips with the Editorial Guidelines starts here> Section 1: The BBC's Editorial Standards

The BBC is also not endowed with limitless resources, something its editors will be quick to point out. Freezes in the Licence Fee have been having cumulative effects over years:
BBC to cut 450 journalists and newsroom staff & BBC boss Tim Davie suggests more job cuts to come and while it's a national sport to beat up on the BBC for having too many managers, even if true that doesn't help the journos and certainly isn't going to endear them to your cause if you are demanding they take notice of you.

The RethinkME event got pushed out by bigger stories - that's journalism. What needs to happen now is for those advocating for ME to regroup, re-present and seek to get journalist other than The Times to be interested in the story. However the very fact that The Times has made it a story on its turf (its own journalist is part of the story) does to some extent having a chilling effect on other news organisations taking an interest. None of this is exceptional - getting attention is hard and numerous media launches go unnoticed every day. And journalists are finely attuned to the complaints of those who say they are being ignored and demanding to be heard - the response, even if unspoken - is rarely complimentary and very unlikely to be sympathetic.

 

[Trish]

To be fair, the BBC did some good coverage of ME recently on Woman's hour with Sean O'Neill and Charles Shepherd. That will have been heard by a lot of people. And for once it didn't attempt the awful 'balance' news editors insist on. We could have ended up with them inviting someone like Sharpe or Crawley on to give the 'other side' of the story which would be worse than useless.

It will be interesting to see what the SMC and BBC do when Crawley reports 'success' with her FITNET trial that must be due to report pretty soon, and that was set up to be able to claim success whatever actually happens.