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About

VALERIE ELIOT SMITH

My background

I am a British barrister. I was called to the Bar of England and Wales in 1987. My background also includes experience in media relations, journalism, conflict resolution, psychotherapy and human resources. My first degree was in English Literature, in 1977, at the University of London (Bedford College). My childhood education took place in the UK and Australia.

I have lived with the complex, disabling, multi-systemic, neuro-immune disease myalgic encephalomyelitis  or “ME” (also known unhelpfully, and incorrectly, as “chronic fatigue syndrome” or “CFS”) since 1981. I continued to work, study and practise as a lawyer (general common law – mostly crime) until 2000 when I was further disabled by additional health problems. I have been unable to work in any formal capacity since then.

I completed the first year of training as a psychotherapist in 2002 but became too ill to continue the full 4-year course. I am a Visiting Scholar at the Centre for Commercial Law Studies at Queen Mary, University of London, in order to extend my academic background. However, I am unable to complete any further formal qualifications as I am too ill to fulfill the research, writing and teaching requirements. I continue my research and advocacy work on behalf of ME patients as and when I can (but see my last post PAUSE-REVIEW-REFLECT; towards a bigger picture? [revised version]).

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I originally started this blog in order to publish my work on the so-called “Secret Files on ME“. Since then, after an initial hiatus, I have developed it into something much broader; because of my health, I am not able to post nearly as often as I would like.

My areas of interest are health, generally and ME specifically, and the law, in particular Open Justice, Constitutional & Administrative Law, Human Rights, Freedom of Information, Media, Privacy/Data Protection, Cyberspace and IP law.

The views expressed in the blog are my own. I am not affiliated to any group or professional body relating to ME or CFS issues.

Comments

I welcome comments and my policy is simple: please keep it clear, relevant and lawful. Personal attacks on anyone are not welcome and, in extremis, will be deleted. I will respond as and when I can, depending on my own state of health at the time.

Acknowledgment

If you are making use of information or documents from this blog, I would appreciate it if you would quote the source and credit my work.

Disclaimer

Nothing in this blog should be taken as either legal or medical advice. While I strive to ensure that everything I say is accurate and not misleading, we all make mistakes. If you think I’ve got something wrong then please contact me.

Contact details

You can contact me by leaving a comment on the blog or sending a tweet/direct message via Twitter @SnakeTempleGirl or private message on Facebook. My Facebook name is as it appears at the top of this page. You can also leave a message via my Facebook page Walking Like an Egyptian. You do not need your own Facebook account to use the Facebook options.

Advertising

You may be seeing advertising around the text of this blog. Please understand that I have no control over what you see. The only way that I can stop this happening is to pay WordPress NOT to display advertising. However, as I’m not keen on being blackmailed, I’m declining their offer for the time being.

43 Comments leave one →
  1. Robin permalink
    August 21, 2012 20:38

    Best wishes for this Blog – on these vital issues – as it moves forward.

    Like

  2. Derek Pettitt permalink
    September 11, 2012 07:23

    Best wishes to you Valerie in your fight for an apology from Government over the mistreatment of ME sufferers.

    Like

  3. September 11, 2012 14:24

    Derek – many thanks for your comment. Best wishes to you too.

    Like

    • Derek Pettitt permalink
      September 12, 2012 22:38

      No worries & thankyou for the wishes, i intervened on behalf of Professor Hooper via my MP Mike Hancock over the classification of ME dispute at the DWP which lead to the Health Minister stating ME is a neurological disorder as stated by the DOH & not a Mental Health disorder.
      I have severe ME though much better than I was.
      Any help you need please don’t hesitate to ask, kind regards, Derek

      Like

  4. Lou Burkett permalink
    October 5, 2012 09:05

    Thank you Valerie for the serious amount of work you have undertaken for the ME community. As a parent/ carer I applaud you! I hope you regain all of the energy you’ve spent in pursuing this work. LB

    Like

  5. Liz Blackadder permalink
    March 4, 2013 17:59

    Just wanted to add my thank you Valerie and also to say hope you have a better spell soon – can get on with the things you want to do. This illness certainly forces us to consider priorities – and to disappear every so often! Been ill myself since December 1986 and have had to dip in & out of campaigning & support work as health fluctuates.

    Like

    • March 4, 2013 18:43

      Thank you for your comment, Liz. Yes – it’s so frustrating having to dip in and out, as you say. I have so many things I would like to be getting on with but I can’t because I’m too ill at the moment. But – of course – if we weren’t ill, then we probably wouldn’t be doing this because we would have completely different lives. And thereby hangs the conundrum – that the people who are trying to bring about change for ME/CFS patients are – people with ME/CFS themselves who are therefore too ill to campaign.

      I’m still working on how to break that vicious circle and I know that you will be too. I wish you all the best and thank you for your support. I send mine back to you 🙂

      Like

  6. Helen Smith permalink
    May 27, 2013 08:55

    Hi Valerie – I have just read your (alarming ) blog with regard to the clinical hypothermia. I’m sure I’m late to the party to suggest this, but, as a fellow ME sufferer…….

    Have you looked into the thyroid function/body temperature connection, as low body temp is a classic symptom of hypothyroidism? Even if you’ve had bloods done, which are ‘fine’ (ha ha), you could have a form of thyroid resistance, sometimes referred to as secondary hypothyroidism, as I have, and improve on T3 medication (as opposed to T3&T4 combined which is usually given).

    You may well have already crossed this off your list, but thought I’d mention it just in case! Good luck with your onward journey!

    Helen

    Like

    • May 27, 2013 09:14

      Hi Helen – thank you for your thoughtful comment.

      I have been tested several times for thyroid function (both NHS and private) and the results seemed “normal”. As we know, that doesn’t necessarily mean that everything IS normal at all but the private doctor was thorough and sympathetic to my situation so I didn’t feel able to take it much further.

      Obviously, something is causing the problem but – as is always the case with this appalling illness – it’s multi-systemic, complex and well-hidden. That’s no excuse for where we are at the moment but I think it’s one of the reasons why the medical profession worldwide has been able to avoid addressing our condition – and getting away with it for so long.

      I wish you all the best with your journey too 🙂

      Like

  7. Helen Smith permalink
    May 29, 2013 00:10

    Hi Valerie

    I did think you would have been tested, and whilst I in no way think that the thyroid is the root cause of my illness, the fact that I cant utilise the hormone it makes does cause me a myriad of symptoms, a lot of which overlap with ME, and which I have been able to improve.

    Not to mention, of course, that nothing in the body works as it should (including all the feedback systems that moderate all the body’s responses to all stressors of course!).

    The state of secondary hypothyroidism is not recognised by the allopathic medical community in general, so unless your private doctor was one of the rare ones who are prepared to think outside the box, there’s a good chance he or she wouldn’t have found anything of note?

    If you think there’s the slightest possibility of that, I would urge you to read up on it and pursue some treatment on it, as it’s definitely the difference for me between no life and some life!

    (Sorry, I’m trying not to sound bossy, but desperate for you not to let doctors dismiss ideas that might still have potential for you, but I’m making a bad job of it because I’m tired!).

    I just can’t get past the fact that the thyroid is the main gland for metabolism and therefore, body temperature………

    Ok, well I’m getting off my soapbox now – and off to bed.

    Helen 🙂

    Like

    • May 29, 2013 08:42

      Hi Helen

      Thank you again for your helpful comments. I will investigate further, as you suggest.

      I wish you all the best with your own ME/CFS journey and hope you find more ways of improving your health. We all need to keep looking wherever possible 🙂

      With very best wishes and thank you again.

      Like

  8. Ted Smith permalink
    January 20, 2015 11:46

    You write: “the name of this illness is hotly disputed.” But it is not. The name of this illness is Myalgic Encephalomyelitis, which is only disputed by those who profit from it being called CFS or ME/CFS. I mean literally, profit. Without “ME/CFS” they would be out of a job.

    You go on to say “For the purposes of this blog, I adopt the term “ME/CFS” as my least worst compromise.” I don’t understand why you need to compromise. The name of the illness is… (etc etc) and to mind using the double acronym preferred by the ME-doesn’t-exist-so-treat-it -psychologically PR machine is like doing their propaganda for them. You can almost hear them cheering every time someone says “ME/CFS”.

    Like

  9. Lynda Haight permalink
    June 4, 2015 20:53

    Ted, if I may comment from “across the pond”, we are all unhappy about the name. I agree, it has been a very profitable and dismissive name. However, it was strongly suggested by the chair of the IOM that we “act up” as the HIV/AIDS community did and please believe me when I say we are taking that as encouragement to do exactly as she recommended. The report also encouraged a review in or before five years have passed. Much of the newest and really important studies were not available to the committee during their year of reviewing the research. There is much to be hopeful for in the near future. In the decades That I have been severely ill with ME, I’ve never seen such a fire storm of interest and real science being widely reported. The JAMA, Science,Wall Street Journal and many media outlets have been steadily reporting on the IOM report, study results and patients personal stories. The research now is open and shared, making it available to other researchers, clinicians and medical schools. I agree, this has been a very long, painful and disgraceful amount of time for us, our families and future patients. I feel blessed to have participated in countless trials and studies. Though we haven’t seen all the embargoed information, I eagerly anticipate every new piece of new information as I believe though it’s been slow going, the pieces of the puzzle are coming together. Without that hope, my life would have no meaning. Be hopeful, there really is much to look forward to as more results become available and new researchers begin new research.

    Like

  10. Dawn Shimmield permalink
    February 15, 2016 11:29

    Thank you, thank you , thank you. We are a family of 3 generations with ME. My mother aged 81 now who has had ME for 40 years and her life ruined – and also that of my father as the prime carer. Myself, mild, but still having to manage, and my son who was diagnosed at the age of 12, and is now 23, but with symptoms that are baffling to say the least as he doesn’t now seem to fit into the ‘normal’ ME pattern, but at present is unable to work. It is frustrating that so many years down the line we are still not a lot further forward, however due to people like yourself at least we are now more in the public eye.

    Like

    • February 15, 2016 11:33

      Thank you, Dawn. I’m so sorry to hear your story. To have your family destroyed by this illness over three generations is truly devastating.

      Very best wishes to all of you.

      Like

  11. February 15, 2016 12:31

    From my heart, as a fellow ME sufferer of 20+ years who lives in Australia, I say thank you!! You are able to articulate so well what we all want the medical profession & the world to know about our illness, and how we are mistreated. I just read The Ghost in the Room, regarding Karina Hansen. If only those with any power would take up her cause! I have signed many petitions for her. I feel for you with what this illness has robbed you of. But you are a true warrior (as most of us are) & have continued fighting when you are able. Again, many thanks!

    Liked by 1 person

    • February 15, 2016 12:34

      Thank you so much for your comment, Jacquie. Yes, it’s a battle and a tragedy – but we can only keep on fighting.

      Like

  12. mary permalink
    February 15, 2016 23:35

    Can an organisation such as Amnesty help Karina?

    Like

  13. February 16, 2016 00:04

    I have been following this unfortunate story and was thankful for your interest in Karina and update. I have been going through my own trials and tribulations, mainly with psychiatrists who are not being at all fair with their written remarks and personal attacks on my integrity, insight and judgement.
    I am proceeding to file a complaint with the Human rights Commission here in New Brunswick, Canada, as I believe my situation will only deteriorate as I get older. I have been diagnosed with ME/FM, multiple chemical sensitivities, joint hypermobility and recently, with cardiac pathology that has been linked, with scientific research, to ME.
    I have written my story in Judging Judi, available at Lulu.Com, published 3 years ago, but psychiatry is continuing to abuse me and I see no other way to try to stop it, but to complain to Human Rights Commission.

    Like

    • February 16, 2016 09:22

      Thank you for your comment. I’m very sorry to hear your story. I wish you the best of luck with your complaint to the Human Rights Commission.

      Like

  14. August 17, 2016 19:01

    Sorry to hear you have ME. I have read the FTT decision with interest. I have written an analysis piece on it. It is here: http://ewriter.eu/articles/ClinicalTrialData.pdf The views are entirely my own. It seems the case has become quite bloated and if it is to go to the UT then there needs to be focus on just the anonymisation issue. Run properly there are good prospects of overturning the majority FTT decision.

    Like

    • August 17, 2016 19:05

      Thank you, David.

      Like

    • August 17, 2016 23:20

      Valerie, I have gone to Hell and back in the last twenty years, Mainly because of the way I have been misdiagnosed and maltreated by psychiatry. I wrote my story in Judging Judi and will have a second edition published by the end of this year. I am enclosing the PDF format of the book, which was censored when I published it first, until I gave enough evidence to the publisher that every word written in it has gone through the courts here in Canada.. Because here in North

      America, namely USA, who wants to be different with everything, CFS is used to diagnose many sick patients and then they are considered mind over matter, which is unjust and thoroughly wrong..

      Like

  15. Jane permalink
    September 27, 2016 19:10

    Valerie I have found your articles really interesting, helpful and informative. Needless to say I have ME. You have been a source both of information and inspiration Thank you very much for all your work 🙂

    Like

    • September 27, 2016 19:35

      Thank you, Jane. I really appreciate your comments.
      I wish you all the best with your ME and with everything else in your life.

      Like

  16. Lidia Thompson permalink
    October 25, 2016 20:08

    Dear Valerie,
    In view of the change in the law for consent in March 2015, the recent revelations regarding the lack of statistically significant recovery in the PACE Trial, the mounting research showing exercise intolerance in people with ME and the recent refusal of NICE to change their guidelines any time soon, does the patient community not now have a really strong case to take before the courts?

    1. Bogus treatment and the law: http://me-ireland.com/bogus.htm

    2. Unique characeristics of pw ME/CFS as defined by the CCC and ICC and exercise physiologist experts eg Workwell Foundation, Snell, VanNess, Stevens, Klimas: https://www.whatdotheyknow.com/request/unique_characeristics_of_pw_mecf#incoming-883778

    3. NICE takes a dim view of foreign work on ME/CFS | Robin Ellis Freedom of Information request | 24 October 2016: http://www.meassociation.org.uk/2016/10/nice-takes-a-dim-view-of-foreign-work-on-mecfs-robin-ellis-freedom-of-information-request-24-october-2016/

    4. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx

    Like

    • October 26, 2016 19:12

      Dear Lidia

      Thank you for your comments. I’m not in a position to respond to your question here as it would be the subject of several lengthy discussions. I’m aware of all the cases to which you refer.

      Briefly – it has ALWAYS been open to ME patients to mount a legal challenge on a number of issues. I do not know why this has not already happened (apart from the obvious limitations of patient resources, both financial and practical). The various charities and groups could have taken this up on behalf of patients a long time ago but, for some reason, have not done so .

      The position has probably strengthened a little in recent years, for a variety of reasons. However, the Montgomery case from 2015 that you refer to does not significantly change the existing situation for ME patients on a practical level. It is an important and useful case but it was elevated beyond that by some misleading discussion in the last few months. Our biggest challenge is still the NICE Guidelines.

      I hope that goes some way towards answering your question.

      Best wishes

      Like

Trackbacks

  1. The PACE Trial: David Tuller investigates – Part 1 | valerieeliotsmith
  2. PACE Trial article follow-up: the momentum continues | valerieeliotsmith
  3. More PACE: How the Spin got Spun (and the Information Commissioner gets tough…) | valerieeliotsmith
  4. ME experts call for independent review of the controversial PACE Trial | valerieeliotsmith
  5. Queen Mary University of London to appeal Information Commissioner’s decision on disclosure of PACE Trial data | valerieeliotsmith
  6. FOIA: a Briefing Note + how many PACE requests? | valerieeliotsmith
  7. Karina Hansen 2: the Ghost in the Room | valerieeliotsmith
  8. Karina Hansen 3: Update March 2016 | valerieeliotsmith
  9. Karina Hansen 4: Timeline, Torture and Tragedy | valerieeliotsmith
  10. QMUL v IC + Matthees (PACE Trial) Part 2: Documents, Open Justice and Open Data | valerieeliotsmith
  11. TRIBUNAL ORDERS RELEASE OF PACE TRIAL DATA (QMUL v the IC and Matthees) | valerieeliotsmith
  12. Karina Hansen 5: A little progress? | valerieeliotsmith
  13. Karina Hansen 6: THE HOMECOMING | valerieeliotsmith
  14. PAUSE-REVIEW-REFLECT: towards a bigger picture? | valerieeliotsmith
  15. PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version] | valerieeliotsmith

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