UK National Archive releases formerly 'closed' file

[currer]

I'm so sorry to hear this story CG.
Like you, I come from an area where there have been ME related deaths, and I remember the period this document covers.
This was when I started getting involved in ME advocacy. We thought even then that change would (must!) come soon because people's suffering was so obvious and extreme.
How little we knew. It is now twenty years ago. It seems so recent and I remember those people so clearly.

I am so angry that our reasonable and just needs have been neglected in such a disgraceful way.

 

[Enid]

Thanks CG - stunned at the "Practice has the right to ignore the existance of a whole disease category". That seems loaded. What an awful time you've had. I recall in my early days (picked up in the street - collapsed, ambulanced to A & E only to have 3 junior Docs produce a psychiatrist as "all in your mind"). Neurological tests (thanks to my GP revealed MRI high spots in the brain amongst other abnormalities). I avoided all the rest - whoever heard of having to avoid Docs before.

 

[currer]

It appears on reading these documents that there has never been any wish to accept ME on the part of the DOH.

No amount of argument or medical evidence would change their stance. Why?..... cost?...

The rituximab research must be a disaster for them.
I'm not surprised the rituximab trials were not publicised here.

 

[Esther12]

Oh. Maybe it's just a word that shrinks learn in school and like to use to show off from time to time

That article didn't sound anything like Wessely to me. It is these sorts of people who use Wessely's work to legitimise their prejudices though, even if Wessely would disagree with them.

 

[peggy-sue]

I had a rotten gp, decades ago who refused point blank to help me with my alcohol addiction. He also refused to treat me for anything until I had beaten it on my own. He actually threw me off his list.
(Best thing he ever did for me, given he was behind massively overprescribing me valium in the '70s, told me he would personally block my access to an abortion if I got pregnant by accident - and gave me systemic anti-fungals for excema... the creep is still, sadly, in practice.)

 

[kaazoom]

The person who managed to get this information released is appealing to have much of the redacted content released too. She is a barrister who has ME. She has a twitter account @SnakeTempleGirl. Hopefully she will succeed where other have failed.

 

[Tito]

However, the article uses this pen name: http://en.wikipedia.org/wiki/Theodore_Dalrymple (Anthony Daniels).

About this person, I found this, http://www.meactionuk.org.uk/Megalomania_in_Modern_Medicine.pdf

 

[Enid]

Interesting find Tito - I always appreciate Margaret Williams writings. Done much (with Prof Hooper) for ME in the UK. I always wondered why my own family of Docs were so cautious about whom they selected when illnesses (out of their fields) struck. Very wise by the look of it.

 

[user9876]

It appears on reading these documents that there has never been any wish to accept ME on the part of the DOH.

No amount of argument or medical evidence would change their stance. Why?..... cost?...

The rituximab research must be a disaster for them.
I'm not surprised the rituximab trials were not publicised here.

The impression I got was they would put effort into managing advocacy groups so that they didn't have to do anything. To me these documents reveal a very poor attitude of 'we know best and we cann't be bothered to think about ME" or in the case of the DWP "we don't believe in ME".

I don't think things have changed either.

This seems to be a group of people who think they know best and resent people pointing out that they don't. Over the last 20 years there has been a revolution in the way ordinary people can easily access huge amounts of information (academic papers, government policy and practices) as well as discuss them. Many professional groups seem to really hate this. I tend to think it is very mediocre professionals who are trying to justify their position they realise that there value is in the (not very complex) thinks they know and the processes they run. Hence as this information becomes public there is fear and reaction like trying to keep it all private.

 

[currer]

That is all true,user, but I think there is something more in the case of ME.

It is not just the decision of one bureaucrat on the evidence of the papers in front of him.

The attitude to ME shows a coordinated front in both the US and Britain, and suggests to me a deliberate, behind the scenes policy. Why? is it the cost of paying for all these sick young people?

These concerns would not be elaborated in documents and certainly not in these documents which are censored in places.

 

[SilverbladeTE]

Curer
why?

• Cost and selling their countries out to the insurance companies
• Fear or reality of, secret biological weapon research on our civilian populations and/or vaccine contamination
• Religious-style megalomania of many in upper reaches of medical power.
• Control, always, always control

just the possibility that it maybe related ot their secret and illegal bioweapon research or screw up their lcurative and arrogant vaccine regimes (tied into the power/paternalism of the State) is enough to send 'em into panic mode
and, once Cold War was done, maintaining the cover up becomes the whole issue
note that with many scandals, like Watergate, it's the cover up that becomes the big thing
anything to cover up something that will cause trouble.

note the UFO cover up is mostly all about not wanting to admit our air defences were breached huge numbers of times and made a complete mockery of our vaunted, expensive air defence systems
doesn't matter WTH "UFOs" are/were, merely that if the Public knew all that tax money, all that scary power our leaders ahd, wasn't worth jack squat, they'd doubt, they'd think, they'd no longer fear the leaders...

 

[currer]

Now Silverblade, to someone who did not know you, the above post would seem slightly crackers!

BUT I went onto your website and I reckon - yes - there are UFOs indeed.!

 

[user9876]

I'm not sure whether I should post this or no......what the heck...............

Yes, bits are blacked out.......................parts where (probably) my name and the names of other patients I represented who, like me, were being very badly treated by a certain repeatedly named medical practice in the south west of England. I suspect the details of our cases, and possibly the names of the GPs are also included, which is why it has been backed out.

It certainly made interesting reading for me.

I also note that the reason for the refusal to accept my complaint against the Practice after the death of a patient with ME following deliberate medical neglect was also on the agenda of at least one of the meetings...........as was the reason. (The reason is partially explained, but it is best not posted on an open forum.) The death is not mentioned.

I was told by the CHC that a Practice had the right to ignore the existence of a whole disease category (even though it resulted in the death of a patient) if they so wished without contravening their contractual agreement. Much to my surprise, this very issue was raised at a meeting at Richmond in connection with the serious difficulties I and others were experiencing, but whether the doctors actually had the prerogative to do this was not determined or at least not stated. Does anyone know the law on this? Much to my surprise, I received a call from the GMC to tell me they were watching. I wonder how they knew?

I am so glad that the Practice which caused such great harm and suffering has been publicly named. The situation has not improved to any marked degree after 20 long years.

C.G.

I though comments on page 114 were interesting

3. I note Dr Hilton has picked up the sentence on paragraph 3.2 "Dr Robert Hangartner said that he would explore another possibility." I think on this Dr Sykes is correct. As I recall what I had in mind was to enquire of colleagues in HCD-SD whether a blanket refusal on the part of a practice to recognise the existance of a condition was contrary to "terms and conditions of service" I certainly would not wish that to appear in the record which is why I did not elaborate at the meeting. It would of course be an entirely different matter if the GPs concerned recognised the existance of ME but did not consider it was the correct diagnosis in a particular individual case. My recollection is that Dr Shepherd was referring to the former set of curcumstances rather than the latter.

I had to type out the quote. Should be correct but may have got spellings or odd word wrong.

 

[user9876]

Curer
why?

• Cost and selling their countries out to the insurance companies
• Fear or reality of, secret biological weapon research on our civilian populations and/or vaccine contamination
• Religious-style megalomania of many in upper reaches of medical power.
• Control, always, always control

just the possibility that it maybe related ot their secret and illegal bioweapon research or screw up their lcurative and arrogant vaccine regimes (tied into the power/paternalism of the State) is enough to send 'em into panic mode
and, once Cold War was done, maintaining the cover up becomes the whole issue
note that with many scandals, like Watergate, it's the cover up that becomes the big thing
anything to cover up something that will cause trouble.

note the UFO cover up is mostly all about not wanting to admit our air defences were breached huge numbers of times and made a complete mockery of our vaunted, expensive air defence systems
doesn't matter WTH "UFOs" are/were, merely that if the Public knew all that tax money, all that scary power our leaders ahd, wasn't worth jack squat, they'd doubt, they'd think, they'd no longer fear the leaders...

I don't think it is about cost. Costs of chronic disease are huge so research makes sense.

I do think doctors have a denial of new disease. Think about BSE. It was well known for several years whilst being denied by the government's medical advisors and the ministry of agriculture. I suspect there was a huge fear of not knowing hence a coverup.

With ME the psychs give a convenient "its all in their minds" explanation which reduces this fear of the unknown. Nobody bothers to think they have said that for every unexplained disease until it is better understood.

I wonder if there is something in the fear of a connection to porton down (chemical weapons establishment). Lots of experiments in the 50s with the Royal free out break being in the 50s. I don't think there is a connection but it may be a fear leading to extra secrecy. Similar to downplaying gulf war syndrome.

 

[SilverbladeTE]

That's why I keep noting that just the FEAR, the possibility is what maybe behind it all
half the time the nitiwts didn't know what the other nitwits were up to, or too scared to ask, or just wanted to keep their heads down, their asses protected and bury it all under "The Mushroom treatment"

And you make one, classic mistake, one so so many people have made over the years regarding what our bureacrats and wonderful, brillaint, fantastic, hyper-evolved leaders (sarcasm gland on overdrive ) may do:

I don't think it is about cost. Costs of chronic disease are huge so research makes sense.

it only makes sense, if you aren't a stupid bastard!
These wahoos are illegitimii pendejos deluxio!
So of course it's bloody stupid to us, but not to them

The number of stupid bloody things ocmmittees and "Whitehall wallahs" have done is mind boggling.
One of my all time faves is, those assholes telling, ordering in fact, the scientists and engineers at Windscale, how too run a nuclear reactor to make plutonium and not to shut it down!
Wow, wasn't that clever of them!

(this is of course, not directed at you!! in case anyone misconstrues, but at the stupid ear-wax chewers who infest committees, hallls of bureacracy etc )

hell, maybe I'm a Windscale mutant!

 

[SilverbladeTE]

Now Silverblade, to someone who did not know you, the above post would seem slightly crackers!

BUT I went onto your website and I reckon - yes - there are UFOs indeed.!

Hey! what do you mean "slightly"!
I resent that remark!!
I am COMPLETELY cracked, I'll have you know!
*sniffs, holds nose in air, piqued!*

lol

*to wider audience, not Currer*
I know such talk seems ti strengthen the "enemy", showing us to be all "crackpots"
but, we are already consigned to the wastebin, we are ridiculed as is, so no damn point even trying to "act sane" for those ass clowns as they will always dismiss us.
So, my mentioning of UFOs is quite serious.

*back to currer*
the reality, alien, mirage, misidentifiaction etc, wasn't the issue by later stages of Cold War, they were means to hide secret tests, and had to be made a laughing stock to keep Warsaw pact guessing and most seriously, to prevent folk questioning the "Imperial Might Of the new Rome"
UFO events were seen not just by eyes but on radar, many times, made complete mockery of air defences.
This could not be allowed ot seep into public conscience, so they were made a joke
that which is intangible or beyond your reach and wish to defeat/destroy, you don't blow up, instead you make a laughing stock of....
since UFOs, and ME patients are a laughing stock/scroungers, folk won#t support them for fear of also being a laughing stock or conned out of money.
Thus you can make anything disappear.
Psy-ops

and as I keep telling folk on UFOs, go read up on the belgian incidents 80s and 90s, multiple military radar, air and ground, visual observers in F16s and on ground etc, tracked those objects doing right angle turns, instant accelerations and other stuff that's impossible by our sciences/engineering.

 

[alex3619]

That is all true,user, but I think there is something more in the case of ME.

It is not just the decision of one bureaucrat on the evidence of the papers in front of him.

The attitude to ME shows a coordinated front in both the US and Britain, and suggests to me a deliberate, behind the scenes policy. Why? is it the cost of paying for all these sick young people?

These concerns would not be elaborated in documents and certainly not in these documents which are censored in places.

Hi currer, I am coming to the view that this is not really about ME, its about broader issues of which ME is just one. Its about the control of medicine. I am still thinking about this. Along the way I have made progress in thinking about Zombie Science. This is a phenomena described for evidence based medicine, but now I think its much broader than that and is an example of how industry and special interest groups affect science in general as well as public perception of science. Bye, Alex

 

[alex3619]

I don't think it is about cost. Costs of chronic disease are huge so research makes sense.

I do think doctors have a denial of new disease. Think about BSE. It was well known for several years whilst being denied by the government's medical advisors and the ministry of agriculture. I suspect there was a huge fear of not knowing hence a coverup.

With ME the psychs give a convenient "its all in their minds" explanation which reduces this fear of the unknown. Nobody bothers to think they have said that for every unexplained disease until it is better understood.

I wonder if there is something in the fear of a connection to porton down (chemical weapons establishment). Lots of experiments in the 50s with the Royal free out break being in the 50s. I don't think there is a connection but it may be a fear leading to extra secrecy. Similar to downplaying gulf war syndrome.

Hi user9876, if the system were rational I would agree with you. However, each government department, or other organization, doesn't care about total cost. They care about their costs. The cost of chronic disease is huge, but the way things are set up almost every department considers it someone elses problem. Sure health departments are concerned, but they are about treatment not research. Thats another department. Government should fix this by enacting legislation that fixes responsibilities properly - but they typically fail to.

If find it easier, currently, to think of the psychobabble as a cult, founded by Freud, but with other influential leaders in the current day. As a sociological phenomenon this makes more sense. Cults are based on doctrine that is resistent to outside influence or criticism, and typically have one or more charismatic leaders.

Bye, Alex

 

[user9876]

Hi user9876, if the system were rational I would agree with you. However, each government department, or other organization, doesn't care about total cost. They care about their costs. The cost of chronic disease is huge, but the way things are set up almost every department considers it someone elses problem. Sure health departments are concerned, but they are about treatment not research. Thats another department. Government should fix this by enacting legislation that fixes responsibilities properly - but they typically fail to.

If find it easier, currently, to think of the psychobabble as a cult, founded by Freud, but with other influential leaders in the current day. As a sociological phenomenon this makes more sense. Cults are based on doctrine that is resistent to outside influence or criticism, and typically have one or more charismatic leaders.

Bye, Alex

You can see the different departments concerns and saying 'we're DoH we can't have an opinion on benefits' or 'we can't comment on diagnosis'. Your right in that government is disfunctional across departments or even groups within different departments.

I think one of the most important things about cults is they provide simple explanations (normally to how to live your life). This is what the psychs do. You talk about zombe science I know people who compare bad science to the cargo cults (http://en.wikipedia.org/wiki/Cargo_cult) who see and effect (correlation) and keep carrying out a ritual in the hope it will be repeated (as they don't understand the cause).

 

[Guido den Broeder]

On a positive note, it is interesting that in 1991/2 most people involved clearly thought of ME and CFS as two different conditions.

What changed this?