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UK National Archive releases formerly 'closed' file

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Relating to matters from 1993:

'BN141/1 (DWP) is one of the previously 'closed' files on ME/CFS that was not due to be released until January 2072, but it has now been released into the public domain

BN 141/1 was also the subject of an e-petition earlier this year: http://epetitions.direct.gov.uk/petitions/14242

Much of the paperwork that I have had time to scan through at this stage relates to correspondence and meetings that took place in the 1980s and 1990s in relation to the pathological basis and classification of ME/CFS and the assessment of eligibility for sickness and disability benefits...'

MEA Facebook last evening.

Download: Apparently you only have until 21 August to download and save: https://www.yousendit.com/dl?phi_action=app/orchestrateDownload&rurl=https%3A%2F%2Fwww.yousendit.com%2Ftransfer.php%3Faction%3Dbatch_download%26batch_id%3DTEhWeVdveDNWRCtFTmNUQw

From what I have seen it would appear to be wranglings over the classification and treatment of ME and/or CFS and Disability Living Allowance. It's a long document.

I don't think I can plough through it all but it seems to includes all the usual 'suspects' :)
 

Enid

Senior Member
Messages
3,309
Location
UK
Wrangling and the usual suspects - who would have guessed. Thanks for posting Firestormm.
 

currer

Senior Member
Messages
1,409
The early letters reveal a disturbingly close and eager relationship between the DWP, (department of work and pensions) and the disability advisory board, and the psychiatrists.
And incidentally a dislike of ME advocates.
The government departments clearly are familiar with how disabling ME can be.
I wonder why they are so ready to ally themselves with medical opinion that suggests ME is not a serious disease?
I recommend reading this file. It shows how and why the alliances began that still exist and that still are problems for us.

I'm not surprised the other files are still secret.
 

Enid

Senior Member
Messages
3,309
Location
UK
I used to be quite good at picking out the goodies and baddies in old movies - will keep my eyes peeled.:cool: Firestormm.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Yeah I was a little 'cryptic' wasn't I? :)

The first letters I read (and I'm not going to read anything further I don't think) referring to a certain someone revealing the content of a draft proposal by way of a letter to the BMJ I think it was. You can by the way access the letter and the response (also posted in the BMJ) by simply searching on-line by title. The copy in the file is illegible.

I don't think this file will reveal anything fundamental really. It might fill in a few blanks I suppose and will probably lead to quotes being fired around the internet underlining the scorn already levelled at certain individuals. Of course all these examples of jockeying were historic and largely made redundant by the publication of the NICE Guidelines but there might be more that can be used in conjunction with developments at the Department for Work and Pensions.

Still, I do enjoy reading my history so maybe I'll take a peek after all. Let us know if you find anything though, won't you Enid? It could help, as I said, explain a few things we didn't know or weren't privy too :)
 

Spring

Senior Member
Messages
133
Location
Netherlands
I'm from the Netherlands and I was able to download the file. I'm trying to get it on a Dutch site, but I don't know if they are enabled to a download section and I don't know if it is unlegal to make it available after 21th august. Anyone knows?

But if one wants a copy, we need te make sure one's getting one. It is too large for email, but we will figure something out.

I only read a bit. The sound of the replies from the English gov is really disturbing. Apart from the letters from the people we know. But it certainly reveals how deep the matter lies within certain persons.

If one is ever going to write a book about the history of our disease, this documents must be in it. Also interesting for the one who is ever going to write a book about certain psychiatric ilnesses who will turn out to be caused by pathogens just like a gastric ulcer is not psychological. So please download!
 

user9876

Senior Member
Messages
4,556
I hd a quick look and its no where near as long as it appears since there is so much repeated stuff. I didn't see anything that surprised me in the documents. Seemed like DWP and DH officials not wanting to do anything about ME as an illness.
 
Messages
15,786
It's also sideways and backwards. Rotation can be fix by going to View then Rotate View, then Clockwise. The oldest letters are at the very bottom, so it makes a bit more sense if starting at the end and scrolling backwards. And a ton of repetition. What a mess. And nasty.
 

biophile

Places I'd rather be.
Messages
8,977
Skimmed through it briefly. Nothing groundbreaking but more of what was known and will serve as a historical reference. Denial of muscular, neurological, and immune-viral pathology seems based on old-school definitions of gross pathology, but research has since suggested more subtle pathology involving these categories. I did not look closely at the DWP related content, but I imagine there may be a few interesting passages to be found. There is the occasional research paper, eg from Sharpe but also from Behan & Behan. On p5 White is claiming in 1993 that "treatments and rehabilitation programmes are available which address both the physical and psychological factors that maintain this syndrome" (ie CBT/GET). On p212 there is a classically asinine article about how ME patients aren't really ill. I thought a paragraph from p140 served as an accurate prediction of what has unfolded over the last 20 years since it was stated. The wording could be refined to reflect updates, but the paragraph remains essentially as accurate as it did 20 years ago:

p140 (30th March 1992):

p140.jpg


The same reasons for patient frustration still exist. And the "speculations of psychiatrists" continued to do harm (regardless of intention), exposing patients to derision and neglect, not to mention the diversion of limited research resources. The cognitive behavioural model of CFS rose to prominence but various evidence (including the PACE Trial) demonstrates that it is untenable as a primary explanation for CFS. Perhaps the next 20 years will be more progressive.
 
Messages
15,786
On the Freedom of Information Exemption sheets, it lists section 40(2) and 40(3) as the grounds for keeping it hidden until 2072. It looks like those relate to protecting personal information, but this is entirely about government policy for disability benefits - how did they justify that exemption?
 
Messages
13,774
It's also sideways and backwards. Rotation can be fix by going to View then Rotate View, then Clockwise. The oldest letters are at the very bottom, so it makes a bit more sense if starting at the end and scrolling backwards. And a ton of repetition. What a mess. And nasty.

Thanks for letting us know before we started.

I saw someone else mention that this was only a partial declassification. Does this mean bits are blacked out, or we're lacking whole documents? Or did I misunderstand?

Ta all.
 

currer

Senior Member
Messages
1,409
I saw someone else mention that this was only a partial declassification. Does this mean bits are blacked out, or we're lacking whole documents? Or did I misunderstand?

.

There do seem to be bits of documents missing.
 

currer

Senior Member
Messages
1,409
On the Freedom of Information Exemption sheets, it lists section 40(2) and 40(3) as the grounds for keeping it hidden until 2072. It looks like those relate to protecting personal information, but this is entirely about government policy for disability benefits - how did they justify that exemption?

Yes I agree. I understood the reason for refusing to declassify these documents was because of patient information that would be wrong to make public. 2072 seems like an overreaction for this collection of documents, although interesting, hardly a risk to the state. Reminds us how obsessed with secrecy and mistrustful of their "citizens" the British ruling elite are.

Edit. Reading this collection more carefully, I can see that it is only bland because large sections are still secret and blacked out.
 

Countrygirl

Senior Member
Messages
5,387
Location
UK
Thanks for letting us know before we started.

I saw someone else mention that this was only a partial declassification. Does this mean bits are blacked out, or we're lacking whole documents? Or did I misunderstand?

Ta all.

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.