Question about the UK ME 'powers that be'

[Trooper]

Hiya

Great forum, I have lurked here since the XMRV papers was published in October and have found it a great source of information, so thanks for all your comments, updates and action that happens here.

Ok, I lied in the title - I have two questions : )

1. I don't really know how to ask this succinctly, so please forgive my longwinded way of asking this! I'm just trying to understand the basic mechanics of how ME is addressed as a medical condition in the UK. So we have the government, the Medical Research Council, NICE, the department of health, advisors and scientists. And whoever else I missed out!

I'm trying to understand how all these parts join up (or not as the case maybe) and who, ultimately, is responsible for helping those with ME to get better - again it may the case that no one technically is. I find fitting these organisations together rather confusing!

A answer along the lines of 'the xyz funds the xyz, who in turn xyz the xyz...' would be greatly appreciated. I would also be interested in where Simon Wessely fits into this hierarchy.

2. It is often quoted that there are 250,000 people in the UK with ME. Where and when exactly did this figure come from? Some kind of surveillance program I would guess, but who's? Has this figure ever fluctuated?

Cheers : )

 

[_Kim_]

Welcome to the forums Trooper.

I don't have the answers you are looking for, but I'm sure some of our UK members can help.

 

[Bob]

Hi Trooper,

I'm just the same as you... I've been lurking here since the XMRV news and i joined up last week.
It's a great forum isn't it!
I live in the UK as well.

I'll answer your question to the best of my knowledge but i might not be 100% accurate on the more technical bits.

The Government are at the top of the pyramid and they have ultimate decision making responsibility, and accountability, for all government organisations.
The Prime Minister is the head of Government.

The Department of Health is within the government. It is one of the main governmental departments, sitting alongside The Department of Education, and The Foreign Office etc.
The Health Secretary runs the Department of health, and his/her direct boss is the Prime Minister.
Each Government Department has its own Secretary of State, and there are other ministers within each department.
As a whole, these Secretaries of States and Government Departments, and the Prime Minister, are the government.

By 'Advisers', I suppose you mean government advisers?
They do just what it says on the tin... they give advice to government ministers. Sometimes they are experts in a particular field, and so they can bring in expertise to the government.
Advisers do not decide policy.

The Medical Research Council is an 'independent' government body and it provides funding for medical research out of a fund which they get from government.
'Independent' means that they run their own affairs and make their own decisions, at 'arms length' from the government, according to their own 'constitution' without interference from Government.
But the government decides the 'consitution' of the MRC and the framework that it must work by.
(I've called it a 'constitution', but I don't know what their framework is actually called.)

NICE is run in a similar way to the MRC, in that it is an independent body. It decides certain policy for the NHS in relation to clinical matters, such as which treatments are best for specific illnesses.

Scientists can work anywhere. To be a scientist you need to have an education in Science.
Scientists can work as advisers, they can work for the government, and for the MRC and for NICE etc.
Scientists are often based at universities or affiliated to universities.

The government is ultimately responsible for decision making but they often say that it isn't their business because, for example, the MRC is an independent body.
In some ways it can be good if an organisation is independent from government interference because it means that decisions are not taken for purely political reasons.
But it doesn't always work, and these organisations aren't always run well.
If enough people make enough noise, then the government usually steps into to get things done. That's why it's good to campaign and write letters!
We all vote for the government, so ultimately, in a democracy, maybe we are responsible for the decisions that the government take.

Simon Wessely seems to work for various organisations. He is officially a scientist, although many of us would question that!
He works for Imperial College, a university, and he works for an NHS foundation trust, and he probably has loads of other jobs too.
He seems to have a lot of influence, and I'm not sure why. He just seems to be very successful in furthering his own career.


The 250,000 figure is an estimate that some ME organisations use. I don't know what the figure is based on.
I think NICE use a different estimate of 150,000.
I suppose they are both based on research.
No one can know exactly what the figure is because the NHS don't collect the figures like they do with HIV.
And, also, not everyone with ME/CFS goes to see a doctor anyway.
If you take both figures into account, it must be safe to say that there are up to 250,000 people with ME in the UK.

I hope that helps you a bit.. let me know if you need any more details.
enjoy the forum,
best wishes,
Bob

 

[Trooper]

Thanks for the welcome Kim : )

......

Bob.. Thanks so much for this. It's exactly the kind of overview I was looking for : )

I guess that the MRC and NICE must be connected also.

"The government is ultimately responsible for decision making but they often say that it isn't their business because, for example, the MRC is an independent body."

It's tricky to find where the buck stops when there are two 'independent' government bodies involved. As you say, it must ultimately be with the government. It's so baffling that the government would not be able to insist that the MRC earmarks a fund towards biological studies - hopefully the current momentum will see some arm twisting somewhere.

Yes, this forum is a good one : )

Thanks again Bob : )

 

[ukxmrv]

Trooper, it's a great question,

In my experience the Government plays pass the parcel - as they claim not to be able to control both NICE and the MRC.

There is a regular meeting at the House of Commons called the APPG on ME and it is attended by patients, MPs and charity representatives. Under questioning Ministers (and there have been a few invited) claim that NICE and the MRC are Independent.

If you look through some of the minutes on their website you can get an idea of who has been to the meetings and what was said

http://www.appgme.org.uk/index.html

 

[thefreeprisoner]

[bows before the awesomeness of Bob]

Thank you! What a succinct and simple explanation. I'll be bookmarking this thread for later reference, I think...

Rachel xx

 

[Bob]

Thanks Trooper and thefreeprisoner for your comments... pleased to be of help.

Yes Trooper, I suppose that the MRC and NICE have some sort of relationship with each other, and maybe they work together in some areas, but they are separate bodies.
and you are right... it's hard to see where the buck stops.

ukxmrv is right when he says that the government just wants to pass the buck...
they set up these organisations and then says that they are independent and that they can't interfere, but then there's no accountability.

Last year, a couple of ME patients took NICE to court for a Judicial Review.
Judicial Reviews look at the activities of government departments and hold them to the law, so for instance, it can look at NICE and make sure it is working within the law and properly working within the legislation which set it up.
The ME patients were not happy that NICE had recommended only two treatments for ME: CBT and GET, because they said that these were unproven techniques based on psychological theories which were harmful for many patients.
Their main point was that the believed that CBT and GET would be harmful to them.
The judge decided that as long as the proper processes had been followed in order for NICE to make the decisions about CBT and GET then it was not the business of the court.
So where is the accountability? The managers of NICE are not elected so they don't have to listen to anyone or bend to public pressure!

So like we concluded before, governments like to wash their hands of things and pass the buck, but ultimately they do bend to pressure if they get enough of it...
so we just have to keep bashing away at them...

There is some positive movement within the MRC... they've admitted that there is a problem with biomedical funding for ME, and the top boss has set up a 'working group for ME' to bring ME scientists together in order to set up potential research projects that the MRC can then fund...
it's a good first step but it has been criticised for being too little, too late and too slow.
I think Dr Jonathan Kerr is on the team, so it has potential, but they have only had about one meeting since they set it up a year ago, so it seems to be going at a snails pace.

 

[Trooper]

Hi ukxmrv, thanks for the link. I will have a good root around that site. Appreciated : )

...

Bob,

The judicial review case seems like a perfect example of how this odd stalemate continues. And yes, with enough pressure, policies can be changed, or at least have a better chance to be changed. And there's the paradox - applying enough pressure would, I imagine, take a lot of collective energy - yet this is energy that those with ME/CFS often don't have in reserve.

That is good news about the MRC (even if it is too slow etc). This is another area that slightly baffles me - they wait for the scientific ideas to come to them (and often refuse to fund the seemingly good ones). It's both a selective and reactive approach, as opposed to the very proactive one from the WPI - 1. Make a lab 2. Investigate ME/CFS 3. Find things out Anyway, hopefully the WPI have cracked the main part of the puzzle - *fingers crossed*

In the wake of the MP's expenses malarky, there is going to be a lot of new blood in the political system after the general election. This is either going to be a good or bad thing for policy change in all areas. However, remaining positive, perhaps some co-ordinated action to educate this group/change perceptions may be worth considering. Hmm!

Thanks again

 

[Bob]

Trooper,
I agree with everything you're saying.

We don't have much energy, but collectively I think we can make a difference,
and over the years there's already been progress, especially in terms of recognition that ME is a real illness, but yes, there's still a long way to go.
And there's also a lot of smaller ME organisations who do a lot of campaigning, like Invest in ME, so we're not on our own.
But yes, I thank the universe for the WPI!

Yep, It will be interesting to see how the new political system looks, especially if there's a hung parliament, or a change of government.
And hopefully all the new blood will mean a lot of new energy and openness for change.

I like your idea about taking some co-ordinated action.
Something I've been thinking about recently is the idea of setting up an online collective letter writing group where we could share our ideas, and pool our efforts and strengths.
People could use their combined energy to write letters to MP's and the media.

I don't know if that sort of idea has been discussed on this forum already, but I think a group like that would need to be specific to a each country.

 

[Mithriel]

The connecting thread of these organizations is that thye all look for advice on ME, which they have rebranded and widened to be CFS, to the same set of "experts".

These experts all belong to the so called "Wessely School" and believe that CFS, which they defined themselves differently from the US CFS, is a somatisation disorder.

Thanks to referee each others articles and blatantly lying about their results they have convinced government that CBT and GET is all that is required to get people with CFS back to work. They do not believe that CFS is a disease. They call it an illness which they define as a behaviour

They are connected to the Science Media Centre which is meant to make sure that proper science is used in journalism - are you beginning to see what our problem is?

They are also the advisers to the DWP and vet research for the MRC.

No amount of evidence of their perfidy, no amount of scientific research has made the slightest dent in their authority. XMRV is our only hope because the research is being done in the US.

Mithriel

 

[Trooper]

Bob:

Something I've been thinking about recently is the idea of setting up an online collective letter writing group where we could share our ideas, and pool our efforts and strengths.
People could use their combined energy to write letters to MP's and the media.

Yes, this sounds good. My initial reaction is not to start another website, IMO the UK message is already pretty fragmented, if you get me? I will ponder this too. Nice one.

Hi Mithriel. I totally hear what you are saying. They play an extremely tight game. I guess at the moment I am looking for an angle, hence some basic questions about what's what.

I got ill in 1996.

Back then there were an estimated 150,000 - 250,000 people with ME/CFS in the UK.

Today there are still estimated to be 150, 000 - 250,000 people with ME/CFS in the UK.

This costs the government a few billion pounds per year, yet the government don't question the efficacy of GET/CBT even though there has been no drop in estimated cases since the introduction of it.

It all boggles my mind!! Anyway..

I think XMRV will really mix things up too. Even if it doesnt ever prove causation, it does show that with relatively limited resources and more importantly a laser like focus, you can discover things. From what I see, for whatever reason, much of the UK 'powers that be' generally appear apathetic to ME/CFS. In a way I hope they too are being played, rather than being complicit in some way. Fingers crossed it is XMRV.

 

[jace]

I'd love to be included in the letter-writing group - I was always an editor, a completer, and never a prime mover. I'm in Brighton too.

To answer Trouper's question, where does the 250,000 figure come from, I did some heavy research and thinking on this a short while ago, and my conclusion is that is is by multiplying a sample survey figure. 0.37 - 0.4% of population (in various samples) have CFS (whatever they may mean by that) times 60,000,000. You'll find that comes pretty close to 250,000. You have of course heard the phrase 'There's lies, there's damn lies, and then there's statistics' The only way to get an accurate figure would be to examine everyone in the country. NHS figures would be a huge underestimate - we all know how long it takes to get any kind of diagnosis.

To take the exploration of the British Judicial Review of the NICE guidelines further, MEAction's report is here (may heaven bless them) - http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm

 

[Min]

Something I've been thinking about recently is the idea of setting up an online collective letter writing group where we could share our ideas, and pool our efforts and strengths.
People could use their combined energy to write letters to MP's and the media.

The ME Free for All group run by Dr John Greensmith already does this:

http://www.mefreeforall.org/About-ME-Free-For-All-org.8.0.html

 

[Bob]

Trooper, you've hit on something there when you say things can get done with a laser like focus...
(Unfortunately there's not much of that coming from the MRC!)

jace and Trooper, it's great that we are all interesting in doing the same sort of thing, and yes Trooper, i agree with you about not setting up a new website...
I'm new to this forum anyway, so I'm going to stick with it for a while and see where it takes me!
We three can swap ideas, help each other out with info, and inspire each other here anyway.

Min, thanks for the info... I'll have a look at that website.