In all this talk about the ‘Name Change Report’, here’s where we came in… | 20 February 2015

February 20, 2015


Ramsay Book covers 2012 copyWith reference to all the current discussion on the new IoM name (SEID) and the possible use of Ramsay's Disease instead, a reminder about an important source of information from The MEA:

The MEA has republished Dr Melvin Ramsay's book that covers the historical outbreaks of ME.

This includes the famous outbreak at the Royal Free Hospital, which led to The Lancet editorial and the widespread introduction of the term ME/myalgic encephalomyelitis here in the UK.

There are detailed accounts of what Melvin described as the epidemic form (ie the outbreaks in Iceland, South Africa/Durban, Cumbria, Royal Free, etc) of ME and the sporadic (ie individual cases) form of the disease in the book.

It should be noted that the clinical descriptions – which included hard neurological signs such as cranial nerve palsies – of the doctors and patients who were admitted to the Royal Free Hospital are not the same as the clinical presentations that we normally see during the acute phase in sporadic cases today.

I knew Melvin for many years, right up to the year he died, and discussed these similarities and differences with him on many occasions.

The book is essential reading for anyone who is interested in the early history of ME and the enormous contribution that was made by Melvin.

MEA literature order form: www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-30-12-14-copy.pdf

Details of Melvin's book are on page 7.

It can also be purchased for £6 online here: www.meassociation.org.uk/shop/books/saga-of-royal-free-disease/

Dr Melvin Ramsay had a close and longstanding relationship with the MEA, as did his daughter Louie Ramsay. This is why we named our research fund The MEA Ramsay Research Fund.

Dr Charles Shepherd
Honorary Medical Adviser, The ME Association

6 thoughts on “In all this talk about the ‘Name Change Report’, here’s where we came in… | 20 February 2015”

  1. The US Institute of Medicine (IOM) propose to change CFS/ME to ‘systemic exertion intolerance disease’. The Lancet editorial defends the PACE Trial and its ‘graded exercise therapy’ treatment. Indeed, it claims that “despite critical reception at the time of publication, the results of the PACE Trial paved the way for this IOM report.”

    So, according to the Lancet, the PACE Trial’s exercise therapy treatment has resulted in CFS/ME being rebranded ‘my body can’t tolerate exercise’ disease. Does anyone see a flaw?

  2. I see many flaws!! The first being that the review by Cochran was a study group for Depression, Anxiety and Neurosis. None of which should be applied in my view. All their evidence comes from past psychiatric/psychological study papers, including PACE Trials, which are inherently flawed from the start. Database of evidence lacking in all the biomedical trial evidence and therefore flawed already 6th sub analysis taking place Why?? WHO considered ME/CFS as a Serious Neurological Disease. Comment in Cochran report: Only those who WERE ABLE TO PARTICIPATE were included. NO comparison with Pain killers, for Neuropathic pain or Hypertension for vascular problems etc. Those with SERIOUS ADVERSE REACTIONS and DROP OUTS NOT followed up. Why did they have these reactions?? CDC and Oxford Criteria already stated as too broad, which include other illness with CFS!
    Stats from PACE flawed from start and still flawed due to all above. As stated in the final paragraph from authors, The available evidence too sparse to draw conclusions regarding pharmaceutical intervention, yet they say evidence provided from their report and the PACE trial still only SEEMS to suggest that exercise can help!! Vague!! based on flawed evidence, people who were not included, e.g. the seriously ill and flawed criteria!!

    I can recommend Melvyn Ramsay’s book. A clear view of the history of ME, how 2 psychiatrist hijacked his life’s work and turned it into their own. I do wonder what my cranial problems are?!!

    Thank you Dr Shepherd and all at the MEA and Research Family.

  3. The name SEID is just as bad as CFS. This disorder has had too many name already, read Dr Shepard’s book where most of them are stated. I find it hard to believe that a new name alone would yield more research money or credibility / interest among ME-hostile doctors.

    On the top of that a new name will just add more confusion in world wide medical research databases, where it currently is tagged both as ME and CFS, which also has been stated by Dr Lapp (https://www.youtube.com/watch?v=HQCFZispGDI).. I will vote for holding on to ME as myalgic encephalomyelitis and stick to that. Scientific proof of -itis (inflammation) in the brain is now available, which is one of many good reasons why we should insist on M, see http://www.ncbi.nlm.nih.gov/pubmed/24665088.

  4. Be interesting to know what folk in the US think about the name Ramsay’s Disease—I don’t really know how aware Americans are of his work and contribution. I think it’s a fantastic idea that beats any set of idiotic initials into a cocked hat, but there has to be worldwide acceptance and the US is very much key to that. I for one am going to start advocating for it…maybe the MEA has the contacts to start a wider conversation?

  5. Bad move if SEID is adopted. Fits right in with the CBT/GET view, or at least very easy for them to present as such. Bad for the general public too. Sounds far too like deconditioning or indeed the situation in which many people with all kinds of recognised diagnoses ar in re. exercise.
    Why not advocate chronic immune-disturbance fatigue syndrome(s)?
    Chronic – self explanatory
    immune-disturbance – allows for the variety of immune disturbances TH1 or TH2 etc., and the possibility that in some the problem may be auto-immune and in some the cause may be an active pathogen.
    fatigue – self explanatory and easily understood by the general public as being a natural and common consequence of immune disturbance, with which they will be familiar from their own experience. It also puts the fatigue in the context of an immune related condition, which is familar to medics from MS, lupus etc patients.

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