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The “Secret” Files on ME/CFS

August 21, 2012

UPDATE 2016 

This is my original post in the “Secret Files” series, from August 2012. It was written before my work on this subject had been completed.

At that time, posts had begun to appear on social media which were wrongly attributing my work to someone else.  It became clear that I needed to publish an account of my work up that point to set the record straightAs a result, I set up this blog and drafted the document below (in some haste) as the inevitably somewhat unpolished inaugural post.

The next (and more detailed) post in this series can be found here and you can DOWNLOAD THE FILES directly from my two subsequent posts – The Secret Files Unwrapped Part 1 (DWP file) and The Secret Files Unwrapped Part 2 (MRC file).]

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The “Secret” Files on ME/CFS

In the last year, I have used the English Freedom of Information Act 2000 to gain access to these so-called “secret” files at The National Archives at Kew, London, UK. These files are subject to a fairly draconian process of redaction under Section 40 and 41 of the Act and my appeals against those are still ongoing.

It turns out they’re not so secret but they do give us a further body of evidence about how and why we got to where we are at the moment with this crippling disease ie. no recognition, no proper diagnostic process and no effective treatment/cure. I doubt the redactions would tell us much more even if my appeals are successful but I will post more when I have the results.

Read the full article.

6 Comments leave one →
  1. Andrew S Lister permalink
    November 16, 2012 00:35

    Hi

    Thanks for your investigation – although you are not alone in your search – I still have many questions to ask concerning this file (FD 23/4553 and the 40 page secret FD 23/4553/1 – which for some reason has yet to be updated following the release of a number of pages a couple of years ago following my {according to Wessely’s latest comments} “abusive” FOI request (your FOI request is therefore also “abusive use of the Act) – may I enquire as to whether or not you have read the full transcript of the CIBA meeting? Have you yet spoken to anyone present at the symposium in May 1992? If you had then I feel you would have some issues with the “Highlights document” perhaps questioning its accuracy and how could it be that it was represented to a panel of decision makers tasked with distrubution of UK tax payers funds.

    Who decided it was reasonable to ignore the opinions of scientists at the CIBA meeting and grant the decision making to the Mental health board at the MRC? In their defence, how could they make in informed decision on where to direct funding if they are not given all of the information discussed by scientists.

    The CIBA meeting was an ambush. It was the setting of the agenda – there are words and phrases voiced at that meeting that are still in use today by the UK government and the ever helpful media and of course a small but apparently powerful handful of ‘researchers’.

    The MRC hide behind exemptions (assisted by lawyers!) and questionable interpretation of who is worthy of having all of the available information – most of the redacted sections can be filled in from reading the original transcript – it isn’t what they DO say in the document, it is what they fail to mention from the evidence presented at the Symposium, THAT is the issue, also the panel of experts assembled and the ratio of pschiatry bias.

    Yes the file is available – however, the conclusion that it is not secret is invalid as there are sections that are unavailable, by my reckoning, about 22 pages and not 40 pages as stated on the NA website.

    I got the last batch of released documents by arguing the release of funding applications would only be in breach of the act if confidentiality was actually valued by those concerened, ie the applicants – I suggested the MRC contact the researchers to ask if they held any concerns whether or not the information was released. Some obviously agreed that the research was no longer worth classifying as ‘confidential’ as it had been carried out elsewhere many years ago or it was no longer valid.

    An interesting question would be who did the MRC contact in their search for permission to release the information? As there are more funding applications still (dare I say it) secret, were the researchers actually contacted? If they were not, was that because they were AWOL or because they said “No” or the MRC did not want to ask them, or the researchers themselves did not want to be ‘asked’?

    FD 23/4553 is collated in chronological order apart from 1 document. Why is that?
    The register used for the file shows no indication of dates when the file was accessed and there are inconsistencies with the acknowledgents for those priviliged to the information content. What was written on the front cover before being erased? Why was the acronym “M.E” added at a later date to the “series subject” and when was it added? What was written in the top left hand corner of the cover page that has been torn off?

    The pursuit of the remaining content in FD23/4553/1 is not over – there are too many unanswered questions. I have lots and I honestly believe I have a ‘need’ to know.

    Regards

    Carer for someone with ME (she is a tad angry with the staus quo and can not wait 73 years)

    Like

    • November 16, 2012 13:24

      Andrew – thank you for your comment. I am so sorry that the person for whom you care has ME and I am deeply saddened that both of you live with this terrible illness.

      I wish you all the best with your research on this file and any other work which you undertake on behalf of ME patients. It’s a a long hard road.

      I send my very best wishes to you and the person for whom you care.

      Like

  2. Andrew permalink
    November 16, 2012 21:32

    Hi Valerie,
    Many thanks for your kind words.
    My apologies for the spelling errors, frustration sometimes gets the better of me with this subject. Please feel free to correct. Must learn to think then post.

    Best wishes and thanks again.
    Andrew

    Like

    • November 16, 2012 21:59

      Andrew – I actually thought your comment was extremely well-written. However, I do know what you mean about the anger and frustration taking over. I often find it’s so hard to keep a grip on the the way I feel about the treatment of ME patients worldwide and inevitably the rage spills over into whatever I’m working on.
      That’s when I try to remember that the fault doesn’t lie with me for feeling this way; it lies with those who have put us in this situation in the first place. People like you and I are simpy trying our best, in difficult circumstances, to address a great injustice.
      Again – best wishes and hope for change.

      Like

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