Countrygirl
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http://investinme.org/IIME-Newslet-1709-01.shtml
For the reply from the CMO to IiME in response to their invitation to attend their 2018 conference, which they have declined for the 13th time, see the link. For its interpretation see below:
For the reply from the CMO to IiME in response to their invitation to attend their 2018 conference, which they have declined for the 13th time, see the link. For its interpretation see below:
Dear Invest in ME Research,
You will have seen the reply that my Assistant Private Secretary sent to you regarding your invitation for me to attend the 13th Invest in ME Research International ME Conference on 1st June 2018.
You are nothing if not persistent.
We all understand that you prefer more honest and direct communications at your charity.
So, as you have invited me and my predecessor (and a few of the other UK CMOs) to attend your conferences over these years then I thought that, perhaps, you might appreciate a straight reply, devoid of all the bureaucratic and establishment niceties – if only because then we will not have to go through this charade every year.
It must be quite clear to you, by now, that you are wasting your energy, and my department’s time, by inviting me each year.
Because (as I can see from a cursory glance at your web site) you have twigged it – I just do not care about ME.
Neither, for that matter, does the Department of Health, nor the MRC, nor any minister.
There is no way on earth that I will attend one of your events if I can possibly avoid it – so we always use the same excuse that we are unavailable due to prior commitments.
And if we do not have any then we just block out the week. Something will come along.
We are the establishment and it must be plainly evident that we could not give a proverbial monkey’s about ME, or any of your campaigns or actions or attempts to change things.
You know this, we all know it.
We have things neatly sown up here where requests from you are routinely labelled for the Template Declines folder. So you will get the same reply every year – I am already unavailable, doesn’t matter what date your conference is held on.
For thirteen years you have invited the CMO of England, and the DoH (and a number of health ministers) and the MRC and the chair of NICE to your conferences.
And still you persist.
You recently came to see my Deputy CMO (I could not be bothered to attend, of course – one of the great things about being able to delegate).
It was a little embarrassing for us for a couple of hours (or should I say for my deputy) to be put in the position where we were challenged.
And typical that those crafty CMOs from Scotland, Wales and Northern Ireland got out of the invitation so easily by saying they would follow up with me after the meeting. Yeah, right!
You asked difficult questions of us – questions that we tried to bat away or park or delegate or pass on to others. or, in the end, just ignore.
We told you that we don’t know how many people suffer from ME, we don’t know what causes it, we don’t care if it is likely more prevalent than MS or HIV/AIDS, or that tens of thousands of school children have their lives blighted by it, or that the guidelines for diagnosis are not standardised, or that the terminology around ME is a mess,
We don't need to do anything because what can you do? The Minister of Health will always back us up. Questions in parliament are just swished away with standard template replies or obfuscation, or deception.
What would I care?
How can we be expected to know these things? It is only fifteen years since that dumbass CMO Donaldson did that report of his – did anyone really expect us to do anything with it?
It is only you ME patients and carers who are complaining after all.
We only have to delay the answers or push the problem somewhere else.
Did you see the nice way we bypassed your concern about the FITNET project with our answer to Countess Mar?
"I appreciate your concerns about the study, especially about the ethical status of the research. However, policy colleagues in the Department of Health (DH) who have considered how this trial was commissioned by NIHR HTA, and is being delivered by the lead applicant and sponsor (Prof. Esther Crawley, University of Bristol), have assured me that all scientific and ethical standards and requirements are being fully met. "
Always handy that - to use unnamed "policy colleagues" in the department. Well, you probably know who they are.
When it looks as though some difficult questions are about to come then we just agree to provide a united front.
All we have to do is have a friendly chat at the next cocktail party with some of our friends from the BBC or some freelance journalist who writes for one of the establishment newspapers, aided by one or two presidents or CEOs of some societies or Councils or Trusts, and then we can deflect everything by a story which takes patients’ minds off things for a while.
This is why we can so easily ignore any research which comes along which might actually find the cause of ME.
We, and our colleagues in the MRC and government, have been doing this for years. So it should not come as a surprise to you.
In the end we have also been able to fall back on our friends at NICE by saying we will await the NICE decision on review of the guidelines. Now that is real collaboration.
There is no point in you complaining about the PACE Trial, or the grants the MRC and other establishment orgs give to the BPS lobby – because we will not change anything.
Why are we concerned about your future or any potential research you are able to fund? I’ll be away from this job soon and on to something else.
My friends from the MRC and NHS are also moving on – to more lucrative jobs.
Even though I say it myself we have performed impressive holding jobs on this. An elegant mix of scientific jargon, establishment and civil service waffle, fake news, delaying tactics and just good old apathy.
Everyone is happy with the status quo – except you bloody patients and carers.
It is always a joy to see our good friends at the MRC develop a new “expert panel” for ME, or make a highlight notice for ME, or build a collaborative (a good word that, sounds progressive) group to plan research into ME.
Then we can continue to fund and promote CBT and GET as the most promising treatments for ME.
It is so useful to be able to rely on the MRC guys to starve ME of any biomedical research funding and give it to our BPS champions. It keeps the insurance industry happy, keeps our good friends in influential posts, and I can just let NICE handle the official part of forcing healthcare professionals to avoid taking ME seriously.
Really, see it from my angle - what isn't good about all this?
What does it matter if you patients and carers do not think we are doing anything – it keeps it off our agenda for another few years?
And all we have to do is provide a smokescreen of action for ME being performed – like the Nice review of the guidelines.
I will admit it has been a bit troublesome at times.
And you have not helped us at all with these continuing Colloquiums and Conferences – and now you have even have the CDC and NIH participating.
You could have joined that nice CMRC and signed that damned gagging order to avoid criticising our gatekeepers – it wasn’t much to ask.
But no – you have to continue to be independent and campaign for biomedical research.
What does it matter? We just get our establishment researchers to add “biomedical” in their next presentations and everyone is happy.
Well, except for you.
And it is easy enough for us in the end – while you organise the NIH to attend your conferences our friends at the MRC just take advantage of that and invite them to their meeting just before your conference (sorry, we did not tell you that did we, ha ha).
And then we can pretend we are collaborating (there’s that word again).
We are the establishment. And proud of it.
We just want everyone to remain in our big tent.
It doesn’t help us, of course, that you get that little irritant Tuller to speak at your pre-conference dinner and start revealing all the facts behind the PACE trial.
Why do that?
We had been having such an easy time in recent years and now he is turning up all sorts of things for us to counter.
That is giving us in the establishment a few problems, I'll admit.
No wonder we need a full time media centre to distort...., sorry, correct the perception of science.
Look IiMER - can I call you IiMER – (I know you prefer to be acknowledged as a team).
IiMER, I am not unreasonable – I can see you put a lot of effort and time into your attempts to change things – but why not just make it an easier life for yourselves (and us) and stop doing this?
Because all of us – CMO, NICE, MRC, DoH, establishment Journals, our really rather nice friends in what you call the “Wessely school”, the media and all those other establishment orgs – we are all in it together and there is no way you will change anything.
Because we just do not care.
I hope you appreciate my blunt talking – it is about time you all woke up, smelt the coffee people - and understood that nothing is going to change because we have far too much invested in this – apart from careers and egos and money.
Now I have to get back to other pressing things.
I would wish you good luck with your conference – but really, I just don’t give a rat’s arse about it,
Yours Sincerely and all that,
Will things ever change in ye olde UK?
