How a few people undermined my work and the ME world.
Here are just a few examples of claims made about me to my professional body or on internet sites. They reflect a campaign to undermine my reputation, not a difference of opinion about the nature and treatment of ME. There are many more allegations, all of them untrue. The campaign succeeded in changing people’s opinion about me and as a result, I was no longer asked to help people with their efforts challenging the psychologisation of what is a most dreadful illness. The campaign depressed me but most of all, it hurt them. I felt I needed to let the outside world know what had happened, with factual evidence to support my ‘side of the story’.
The claims are in bold.
- Claim that I tended to present myself as a physician.
From one of the documents sent:
Miss Goudsmit often writes rapid responses to the electronic British Medical Journal in which she aligns herself firmly with the “professionals”: in one such a response on 26th March 2003 she wrote: “To rely on words like ‘functional’ says more about us than about the patient’ problems. It is better that we learn to deal with feelings of inadequacy and not give our patients misleading labels”. This seems to imply that she is a working physician who formally sees patients, when such is not the case. (p. 4)
I don’t believe the date they cited was correct.
The complete rapid response can still be viewed on the BMJ website. http://www.bmj.com/rapid-response/2011/10/29/cant-we-deal-uncertainty
Can’t we deal with uncertainty?
24 December 2002
Chartered Health Psychologist
Teddington TW11 9QX
Why can’t we just say, “I’m terribly sorry but at the moment, I don’t know what’s wrong with you.” Why can’t we be honest, declare that the cause of the symptoms isn’t clear, and offer to refer the patient to a specialist they wish to see?
Honesty will not offend half as much as using terms with meanings likely to be misinterpreted. And which stop us looking. Or send us in the wrong direction.
Some of my fellow mental health professionals seem to find it hard to deal with uncertainty. It’s actually quite a primitive response and something which deserves further attention.
In essence, we can either admit to not knowing, or guess. To rely on words like ‘functional’ generally says more about us than about the patient’s problems.
It’s better that we learn to deal with feelings of inadequacy and not give our patients misleading labels and inappropriate advice.
Personally, I blame TV dramas. Has anyone ever timed how long it takes the doctors to diagnose the patients on Casualty and Holby City? And has any consultant ever admitted to not having a clue?
Ellen Goudsmit C.Psychol.
See also American BMJ. http://www.bmj.com/content/327/7418/E190 2003;Feb:90. BMJ US posted it on their site but appear to have made minor changes. I’ve copied and pasted their version below.
Can’t we deal with uncertainty
Ellen Goudsmit, psychologist (email@example.com)
- Teddington, UK
EDITOR—Why can’t we just say, “I’m terribly sorry but at the moment I don’t know what’s wrong with you”? Why can’t we be honest and declare that the cause of the symptoms isn’t clear? Honesty will not offend half as much as using terms with meanings likely to be misinterpreted—and which stop us from looking, or send us in the wrong direction. Some of my fellow mental health professionals find it hard to deal with uncertainty. It’s actually quite a primitive response and something which deserves further attention. In essence, we can either admit to not knowing, or guess. To rely on words like ‘functional’ generally says more about us than about the patient’s problems. It’s better that we learn to deal with feelings of inadequacy and not give our patients misleading labels and inappropriate advice.
Note again the description of myself as a psychologist and the word ‘mental’ (my italics). Would anyone reading this think that I was a physician? I was a Chartered Psychologist at the time, i.e. qualified and registered to practice. And I did. I was acknowledged as a health care professional by other health care professionals. Only not by bullies.
Readers will not find any article, rapid response or letter where I describe myself as a physician.
- Claim that I was Dr Ramsay’s patient and he did not diagnose ME.
“One of us personally knew the late Dr. Ramsay and his wife very well indeed and it is within our knowledge that, wishing to become his patient, Miss Goudsmit approached him as a patient, whereupon he made a diagnosis regarding Miss Goudsmit that was not ME, and declined to be involved further with her medical needs, suggesting that she should see another doctor who is known personally to us.” (p. 13).
Fact. I was not his patient as he had long retired, and may be best described as his ‘student’. He helped me to write two papers on the Royal Free outbreak (See ME Research Online 24th December 2000 http://freespace.virgin.net/david.axford/melist.htm The medical section in the discussion reflects his views). I sent copies of some of his letters to the BPS to indicate that he was helping me to understand the disease and/or wanted changes in the manuscript. The letters make it clear that I was working on a paper with his help. His daughter confirmed in an email (below) that I was not his patient and he would not have breached rules of confidentiality. A person who was in contact with both of us at the time also confirmed that I was accurate in my description of the relationship (author does not wish her letter to be made public). One of those who alleged I did not have ME was aware that I had been diagnosed by both Prof. Mowbray and Prof. Pinching. I may not have ME as there was no objective test at the time I saw the consultants but in that sense, we were all in the same boat. I had not been given an alternative diagnosis by Dr Ramsay who knew little about my condition as we did not discuss it.
The first part of the email from Ms Ramsay deals with an email from a ‘Caroline’ who had written the following:
“Thank you for your long explanation of what you do. Please allow me to be more to the point. In the 40 years or more that I knew Dr Ramsay and his family and work, your name was never brought up as a colleague. You are a patient with ME. I just hope that you stop misrepresenting yourself as a colleague of the late Dr Ramsay and Dr Richardson. I know most of the original doctors and researchers. You are not one of them. You have your thesis and that does not make you a researcher”.
Fact. I’ll leave aside the suggestion that having a Phd does not make a person a researcher (it’s a research degree), and that I had already published research in books and journals. Of course, I asked the person I worked with at the time, Dr Gordon Parish, one of the original 1955 group, if he knew a ‘Caroline’ and he didn’t. I was not in touch with Dr Richardson. I was, however, a member of the Melvin Ramsay Society, a closed group of ME specialists, alongside Drs Parish, Richardson, Dowsett etc. I had also worked with Dr Dowsett on a study which was included in my PhD, and with Drs Shepherd and Macintyre. I did not have a social relationship with them. I sent Ms Ramsay the allegations and this was her reply.
Dear Dr Goudsmit,
In answer to your letter of the 20th Feb I can confirm that neither I or my two brothers knew the ‘Caroline’ you mention in your letter as a friend of the family.
My father retired in the mid sixties and, you are quite right, he could not have seen you as a patient.
My father would certainly not have breached doctor- patient confidentiality and he never spoke to my brothers or I about any of his patients.
I do hope this is of help to you.
In their response to the BPS, the bullies wrote:
“we confirm that the diagnosis made by Dr Ramsay is known to us and indeed to others who knew Dr Ramsay well over many years and it is one with which we concur. The diagnosis may be noted in Miss Goudsmit’s medical records. We submit that for Miss Goudsmit to be trying to contact Louie Ramsay once again (whom Miss Goudsmit does not know personally) in her attempts to obtain confirmation from her that her father would not have breached patient confidentiality (which he certainly did not) typifies the irrationality displayed by this particular Associate Fellow of the BPS.”
This is interesting as it is now alleged that several people knew the diagnosis made by Dr Ramsay, without him having breached patient confidentiality. The writers, who did not include a single physician or psychologist, agreed with the alleged diagnosis which was supposedly psychiatric (mentioned in a later email from someone who did not know me, let alone my medical history.) NB I had written Dr Ramsay’s obituary for a publication and sent flowers to the family after his death so Ms Ramsay did know me. I was not contacting her out of the blue.
At the end of their response, they wrote “In relation to Miss Goudsmit’s assertion about the breaching of doctor-patient confidentiality (“It’s a serious allegation to make about a doctor)”, we point out that we have never made such an allegation – the only person to have made such an allegation is Miss Goudsmit herself.”
This is true in so far as I identified that the information about my ‘diagnosis’ must have involved the breach of GMC rules. How else could they possibly have obtained the information? ESP? A medium? Perhaps, but as I had not really discussed my illness with Dr Ramsay, what they had learnt from the spirit was not my diagnosis. Note the choice of words, i.e, they were able to “confirm” that the diagnosis was known to them, even though he was not my doctor, had never examined me and there is no medical report to support their claim. Even if they got permission to look though the records, there is nothing in there from Dr Ramsay.
- Claim that I lied about having a Masters degree.
“We have checked with the UK NARIC (National Academic Recognition Information Centre) who have advised that a Dutch ‘Doctoraal’ degree takes longer than a UK BA degree and equates to a BA (Hons), not a MSc as claimed by Miss Goudsmit in her CV… and whilst the Dutch degree of ‘Doctoraal’ does confer the status of “Drs” in the Netherlands, it does not equate to the UK courtesy title of “Dr”.
At the time, NARIC would not provide an opinion without a copy of your degree (which the bullies did not possess), a certified translation of all the wording, plus a fee. What the writers did not know was that the doctoraal had changed from a five year course (equivalent to a Masters) to a four year one (more like a BA or BSc). I completed the five year course and in two subjects (psychophysiology and what would here come under clinical psychology/psychotherapy.) The bullies were seriously suggesting that I had a BA in psychology from Reading (1976), then went to Amsterdam University and did another BA in psychology. I’ve scanned the significant parts of the evaluation of my doctoraal by both NARIC and the Dutch equivalent known as NUFFIC. Each had copies of the certificates and details of the contents of course. As you can see, both accepted that my Dutch doctoraal was equivalent to a Masters. I did not lie about my qualifications. I also sent the BPS exam result certificates relating to medical subjects I had studied at University e.g. neurology, endocrinology, neuroanatomy etc. I haven’t scanned the last page from the NARIC advice as it merely states that it’s for guidance only. The important part is the first page of the evaluation.
The two certificates confirming I didn’t lie about my Masters
NB I obscured part of my address for obvious reasons.
- The claim that my thesis was evaluated and judged to be methodologically very poor.
One of the most baffling claims made was that reviewers working for the NHS (CRD) had evaluated my thesis and had given it the lowest score (see http://www.ncbi.nlm.nih.gov/pubmed/11560542
In their words: “In a study published in 2000 in JAMA… Miss Goudsmit’s thesis received the lowest possible rating and the comment that “The methodological quality was very poor”. They included a copy of the page listing my ‘thesis’, and it was easy for me to respond by simply sending the BPS the previous page showing that two studies listed there had received even lower scores (one received a rating of 0; another 1). My study was given a score of 2 which was later increased to 3 after I wrote to point out a number of errors in their summary. The date of the review was 2001 and the authors did not single out my study as being the only one that was methodologically flawed.
From: “Jos Kleijnen” <firstname.lastname@example.org>
To: “‘Ellen Goudsmit'” <email@example.com>
Subject: CFS Report Date: Wed, 8 Jun 2005 15:08:18 +0100
Dear Dr. Goudsmit,
I now have received the assessments from the independent reviewers. The joint independent reviewers agreed on all but one point with the previous assessments. Regarding the item about baseline comparability, one independent reviewer thought the Anova was ok to deal with this, whereas the second reviewer initially thought it was not but after discussion was happy to change the assessment to “adequate”. Regarding follow-up, both reviewers came to the same assessment as the previous reviewers. In light of this, and emphasising that this is not an acknowledgement that CRD’s initial assessment was wrong, I have requested the following amendment to the report which has now been included on the website, and which will also be included in any paper copies of the report that are sold or distributed.
Erratum: p112 ‘Goudsmit 2000’ should read ‘Goudsmit 1996’. Baseline comparability of groups should be ‘adequate’; VS should be 3.
(I remained disappointed that they did not give credit for the follow-up, but 3 was not a bad score for a small pilot study).
The page from Whiting et al they did not send.
I don’t know why the writers thought that I would not notice the error and send the BPS the page which proved that their claim was inaccurate. I don’t recall reviews of this kind to include complete dissertations.
One can download my PhD from the EthOS website (search for Goudsmit) http://ethos.bl.uk/OrderDetails.do?did=2&uin=uk.bl.ethos.318425
The study is chapter five.
It is not my fault that JAMA did not cite the study correctly. However, even without a strategically placed semi-colon or full-stop, academic readers would have realised that the reference would not have related to the complete thesis as 99% of the time, one has to write up more than one study in Psychology to earn a PhD. Actually, the authors knew it wasn’t my thesis which had been reviewed but if you wish to undermine someone’s reputation as a competent scientist and don’t care about accuracy, then the odd typo comes in useful. Their problem was that their victim pays attention to detail and cares about accuracy.
The following may also be worth considering here. I passed my PhD with top marks and did not have to rewrite anything. Moreover, when the British Library started to digitalise PhDs, mine was chosen as one of the first to be available online. It couldn’t have been because it is short. It’s a door stopper. I’m still amazed that anyone at the British Library knew about my PhD, remembered it and put it forward when they started EthOS. They sent me a letter and this was their email regarding the time:
Subject: RE: my thesis
Date: Fri, 10 Oct 2008 08:50:38 +0100
From: UKTheses@bl.uk To: firstname.lastname@example.org
Your thesis has been digitised and should be among the theses that will be available when EThOS goes live next Tuesday.
Carol Burton Microform and Theses Manager The British Library Boston Spa Wetherby LS23 7BQ…
As for the studies that Whiting et al rated as better, virtually all are trials are on CBT and GET. The use of intention-to-treat analysis was judged more important than the selection of patients with sound criteria. And they did not value those of us who used multiple measures covering a range of symptoms, not just fatigue. Or the fact that the study was conducted in the naturalistic setting of a busy NHS hospital as opposed to a well resourced research clinic.
In another document sent to the BPS, the bullies return to this review and claimed that “Miss Goudsmit has sometimes stated that her work based on the London criteria has been used in this systematic review. There is no mention of the “London” criteria.” (p. 21)
I never made such a claim but if one looks at the page from the review, one can see a study which did use them. I did not use the “London criteria” in the research for my PhD. The participants’ own doctors made the diagnosis. Details of the criteria used in the trial can be found in the thesis and a paper (Goudsmit, EM., Ho-Yen, DO and Dancey, CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Education and Counseling, 2009, 77, 231-236. doi:10.1016/j.pec.2009.05.015). Why the reference to CFS and not ME or post-viral fatigue syndrome? Because editors of respected journals and examiners of PhDs at the time would not accept anything but CFS. This issue also influenced other researchers.
I can go on and fill a book with the falsehoods and defamatory comments by these individuals but I trust that rational and intelligent people must now have got a pretty good impression of the accuracy of the claims. Enough to read any post about me with caution. One might conclude that the writers tended not to check their facts. That they fabricated evidence although they themselves spent many essays criticising others for the poor quality of their research, bias in their articles, and that’s putting it mildly. Some of us were deluged with reams and reams of accusations, all aimed at portraying us in a negative light. After 9 months deliberation, the BPS concluded that I was not to be charged with professional misconduct and a few years later, I was elected a Fellow.
Was this a case of bullying/cyberbullying?
Too many posts about me on Google (especially on the Oneclick and MEAction site) indicate many of the features of bullying, for example:
constant nit-picking, fault-finding and criticism of a trivial nature – the triviality, regularity and frequency betray bullying
See comments about the London criteria. What I wrote was always correct or if not, immediately corrected when I realised I’d made an error.
often there is a grain of truth (but only a grain) in the criticism to fool you into believing the criticism has validity, which it does not;
The grain? I send Prof. White the original version of the London criteria which I helped to formulate, plus the questionnaire that went with it, when I read that he planned to use them to select people with ME for the PACE trial. None of the authors were involved in the decision but it had been made so I wanted to be sure he had the original version and not the dumbed-down one published in the Westcare Report. When Prof. White refused to confirm that he would use the original version, an odd response when you consider that a good scientist wants a reliable set of criteria and not something incomplete, I asked that he not name me as an author given I was not involved in and did not approve of the latter.
Years later, one of the critics rang me about something else and we talked about the London criteria. After all, she and others had been very angry about their use in a deeply flawed trial. I learnt that she was under the impression that the authors held the copyright and must have given permission to the PACE team. I was able to explain that we had not been consulted. Thus she knew years ago, that all her insinuations about my role had been incorrect. I was no help to the PACE team whatsoever. I asked her to rectify the information but she refused.
(Had I known that they were prepared to use the original version, I would not have objected as I am a scientist and hypothesized that the ME subgroup would not be able to complete any programme involving graded activity. By definition, minimal exertion makes the symptoms of ME worse. That would have demonstrated that CBT and GET may help CFS but not ME. As it turned out, the information I saw regarding their version (see appendix I) was a hybrid; similar to the original but not quite. I’ve scanned the main criteria below so those who want to compare and contrast can do so. The original criteria are stricter. More detailed although I have only attached one page. For a more complete view of the additional guidelines, see the updated criteria published in 2009 and online in 2014. (Goudsmit, EM, Shepherd, C., Dancey, CP and Howes, S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009, 18, 1, 26-33.
The original London criteria p1
Some of the claims about the London criteria on the MEAction website were laughable. For example, it was alleged that I had cited a specific study that had used the London criteria. I couldn’t have as I had never heard of that study (it was not in a published paper). There was no source where people could check that I had referred to it. The modus operandi was therefore, I made a claim about a study having used the criteria, there is no mention of the criteria in that study, therefore my claim is wrong. They were right to note that the study did not refer to the London criteria. But then I had never written anything about that study, so I hadn’t made a mistake. I hadn’t been untruthful.
often, the criticism is based on distortion, misrepresentation or fabrication simultaneous with the criticism,
a constant refusal to acknowledge you and your contributions and achievements or to recognise your existence and value,
constant attempts to undermine you and your position, status, worth, value and potential,
being humiliated, shouted at and threatened, often in front of others, finding that your work – and the credit for it – is stolen and plagiarised,
finding that everything you say and do is twisted, distorted and misrepresented.
Absolutely. That pretty much sums up what I had to deal with.
On the positive side, I have a Fellowship of the British Psychological Society and lots of lovely letters to remind me of what I did re ME and other disorders. My work on psychologisation is sometimes cited in academic articles and books and the nonsense I have had to put up with is limited to ME. But the result of the campaign was that people no longer sought my advice on the latter and consequently, those who suffered the most from this were the patients who needed someone with my knowledge to demolish the psychosomatic theory and treatments with ease; e.g. who knew what CBT was and what it wasn’t. Search my name on PubMed and you will note that I challenged the psychobabble for many, many years.
The majority of patients with ME do not fare well on any treatment requiring them to ignore symptoms of overexertion and stick to a pre-determined plan. But there is no other psychologist with my experience of ME who has taken over and challenged the ‘propaganda’ in the UK. There has been no other scientist who has pointed out that the CBT protocol used to treat CFS/ME is based on conditioning theories written about in the 1950s, with assumptions that rest is maladaptive and would make people more ill, reinforced by generous benefits and the kind of attention from family and friends that keeps one in bed. I don’t know about benefits in the 1950s but today, they are hard to obtain. As for attention, I don’t need to expand on that. In short, the rationale for CBT and GET is out-dated, a little unrealistic, lacks evidence and the latest reincarnations emphasising inaccurate thoughts are not much better as they ignore a lot of research. So the rationale is unconvincing. Then one can focus on the results and it’s here where a few patients did ask me for help. Thus there is growing awareness of the design flaws, from an inability to interpret answers to questions if one is ‘more or less’ tired or weak than in the ‘2 weeks’ before, when you have a fluctuating condition, the abnormally high means at follow-up and the complete absence in UK trials of actigraphy (to show that patients did increase their activity levels, as the protocol demands.) I got that message out, though I am rarely credited as the source. The usual courtesies seem to be in short supply in the ME world.
There was never an ‘elephant in the room’, there was no fire and there was not even a match. I asked two of those involved to acknowledge that their claims about me were mistaken and therefore unreliable but they chose not to. With no psychologist like myself, groups lack strong arguments against the Chalder CBT protocol and GET. There are some but they could have demolished the CBT propaganda years ago. I was involved with challenging the hysteria theory of ME in the 1980s so I know what works. Just read the early issues of InterAction. I could have been helpful again but wasn’t asked. It was painful to see the inaccuracies about PACE etc in the media, some of which reinforced the negative stereotype of the poorly informed, prejudiced patient. To read it, know the damage it was doing and not being able to help because I had been tainted was depressing. Those accusations hurt. But here, it wasn’t just me who felt it but thousands of patients with an incredibly debilitating disease. In the USA and Canada, where the bullies were recognised as such, my colleagues keep the GET gravy train in check. There is a more measured debate. And some cite my work on ME. The debate here doesn’t come close to what is should be.
That’s why I believe that everyone needs to know that those responsible for the continued psychologisation included individuals who undermined not only my work but those of other specialists who could have helped them. One has already written a blog with example of errors and I’ve seen posts from another challenging the untruths about him. This is my response. Many years too late perhaps but I was afraid. I’m not afraid anymore.
To anyone who Googles my name and believes anything what they wrote about me on MEAction and OneClick, that is your choice. If you wish to be misled, that is up to you. I prefer accurate information.
Not quite the criteria I helped to formulate.
The campaign incited hatred which persisted long after 2005. Here is one example. It’s one of the nicer emails I received. I was also the recipient of a poison pen letter. But most of the harassment and abuse was conducted online. Too sickening to publish more than the snippets below.
Thanks for this Ellen,
I’ve just read your e-mail and I note its contents but what I said still stands true – you are not a physician and you have tried to pass yourself off as a Doctor and Specialist that would confuse any lay person into believing you are a physician and a medical doctor.
You play with words and that is why pretty well the whole ME community who matter dislike you and your ego.
I’ve already forgotten what you’ve written below and I’ll not read it again because my closing impression was that your text is wholly and completely irrelevant.
You are irrelevant to the future of ME and CFS.
But never mind eh – you keep on fuelling the mental health movement… when Wessely et al have been pretty well silenced by XMRV – you keep the mental health agenda alive and at the heart of the MEA.
Remember, I never claimed to be a physician but having specialised in ME for many years, I did think I could describe myself as a ME specialist. (Look at PubMed for some of the articles). XMRV was eventually rejected as a cause of ME, to my knowledge.
Here are examples of the incitement on the net during the campaign:
Sent: Monday, November 08, 2004 6:54 PM
Subject: GOUDSMIT NEWS ON ONE CLICK
THE RECENT ACTIVITIES OF MISS GOUDSMIT
Miss Ellen Goudsmit (psychologist) has a track record of telling lies in public and supporting the psychiatrists, their colleagues, supporters and friends. See the evidence.
Fact: The modus operandi was to link me to psychiatrists who regarded ME as psychosomatic. However, I have never supported this view so they could not provide any sources. The ‘telling lies’ probably refers to the London criteria. Some claimed, despite evidence, that they had not been used in research. See page from Whiting et al for just one example where it was.
From Oneclick: Post 261:
“Miss Goudsmit is in favour of stripping ME/CFS patients of the neurological classification of ME/CFS that the World Health Organisation endows by propagandising the term Encephalopathy. The mendacious action of Miss Goudsmit – recently revealed – in relation to the ME/CFS community to date should give one considerable pause for thought. This woman has told comprehensive endless lies in public, to suit her own vested self- interest agenda to support Dr. Shepherd, Medical Advisor, of the Myalgic ‘Encephalopathy’ Association. This is a case of one set of discredited hands washing the other….”
Fact: I was not in favour of stripping the G93.3 code for ME from ICD. To the contrary. Dr Shepherd was another target. It was also claimed that he was supporting the psychiatric view of ME which is complete nonsense.
Or this one:
12 May 2005 Editorship : JVR (I’ve removed the complete name for obvious reasons)
The “formal response” by Ellen Goudsmit, mentioned below was posted on the open and uncensored ME NET. It was also posted on Ellen Goudsmit’s favorite list IMEGA – managed and censored by Colin Barton and Chris Clark (the CEO of AfME), who came to terms with the psychiatrists from the Wessely-School. AfME seems to be proud that £8.5 million will be spent for studying *chronic fatigue*. And by collaboration with these psychiatrists Ellen Goudsmit is co-responsible for one of the most scandalous swindle in the medical history. …
FACT: I have never written anything supporting the PACE trial as its flaws were obvious to me. I did not collaborate with the psychiatrists. I was never even given the choice. Please remember, there was no fire and no match. This was all invention and incitement to ‘dislike’
Now multiply these kinds of inciting type posts, reproduced on multiple websites, by 100 and it still won’t reflect what I experienced.
Postscript (following a response to the above).
How did I become a target? When the bullies tried to discredit two physicians who viewed ME as a physical disease, I pointed out the errors in their arguments. That’s all it took. A small group orchestrated the campaign and were not prepared to discuss, debate, let alone correct and apologise. They’re still not.
One of those involved was convicted under the Protection from Harassment Act and this was upheld on appeal (see below with personal details removed for obvious reasons). I had hoped that the ruling would have been the end of the matter, but as long as search engines link to the posts, people continue to be misled.
Given my disability, I regard all my ‘work’ for charities, my research as well as my articles and letters in various publications as real achievements. However, I know from friends that as a result of the campaign, people searching for information about me on the internet will get a completely distorted view of my competence as a professional and expertise in relation to myalgic encephalomyelitis as described by Ramsay.
Work (largely pro-Deo)
Director of the International Federation of M.E. Associations (IFMEA).
Editor of InterAction (the M.E. Action Campaign, now AFME), the Marcé Society Newsletter and newsletter of the National Association for Premenstrual Syndrome (NAPS).
Medical journalist (DLF – paid).
Co-founder ME Stichting (Holland).
Advisor to various charities including National Association for Premenstrual Syndrome, Premsoc, Association for Post-Natal Illness, M.E. Association, Action for M.E.
Visiting Research Fellow, University of East London (2008-2012)
Editor, M.E. and CFS References (1989-2010).
Advisor to the ME Association (2009-2010)
Just a few of my scientific articles, chapters in books etc.
Functional Disorders of the Menstrual Cycle (co‑editor with Dr. M.G. Brush). Chichester: Wiley 1988.
Brush, MG and Goudsmit, EM. General and social considerations in research on menstrual cycle disorders with particular reference to PMS. In Brush, MG and Goudsmit, EM (eds.): Functional Disorders of the Menstrual Cycle. Chichester: Wiley 1988. Pp.1-13.
Goudsmit, EM. Psychological aspects of premenstrual symptoms. In Brush, MG and Goudsmit, EM (eds.): Functional Disorders of the Menstrual Cycle. Chichester: Wiley 1988. Pp. 20-26.
Goudsmit, EM. Anxiety and Depression in Premenstrual Syndrome. In Spielberger CD, Sarason IG, and Defares PB (eds), Stress and Anxiety, vol. 11. NY: Hemisphere, 1988. Pp. 211-217.
Goudsmit, EM. The Psychologisation of illness. In Brostoff J, Challacombe SJ (eds.) Food Allergy and Intolerance. 2002. 2nd Edition. WB Saunders. Pp. 685-693.
Goudsmit, EM. Psychological aspects of premenstrual symptoms. Journal of Psychosomatic Obstetrics and Gynaecology, 1983, 2, 20‑26.
Goudsmit, EM. All in her mind! Stereotypic views and the psychologisation of women’s illness. Health Psychology Update, 1993, 12, 28-32. Reprinted in Wilkinson S and Kitzinger C (eds.) Women and Health. Feminist Perspectives. London: Taylor and Francis, 1994. Pp. 7-12.
Goudsmit, EM. ME and CFS: why patients and doctors cannot agree. Health Psychology Update, 1998, 31, 10-13.
Goudsmit, E and Stouten, B. Chronic fatigue syndrome: editorial bias in the British Medical Journal. Journal of Chronic Fatigue Syndrome, 2004, 12, 4, 47-59.
Goudsmit, EM and Howes, S. Pacing: A strategy to improve energy management in chronic fatigue syndrome. Health Psychology Update, 2008, 17, 1, 46-52. http://www.health-psychology.org.uk/HPUContent/contents2008.php
Goudsmit, EM., Stouten, B and Howes, S. Fatigue in myalgic encephalomyelitis. Bulletin of the IACFS/ME, 2008, 16, 3, 3-10.
Goudsmit, EM and Howes, S. Is multiple chemical sensitivity a result of expectations and beliefs? A critical evaluation of provocation studies. Journal of Nutritional & Environmental Medicine, 2008, 17, 3, 195-211.
Goudsmit, EM., Stouten, B and Howes, S. Illness intrusiveness in myalgic encephalomyelitis. An exploratory study. Journal of Health Psychology, 2009, 14, 2, 215-221.
Goudsmit, EM, Shepherd, C., Dancey, CP and Howes, S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009, 18, 1, 26-33.
Translated into Dutch and published in Lees Me, 2010, 10, 4-47. Updated by EMG in 2012 and published online (2012, 21st Oct):
Goudsmit, EM., Ho-Yen, DO and Dancey, CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Education and Counseling, 2009, 77, 231-236. doi:10.1016/j.pec.2009.05.015.
Stouten, B and Goudsmit, EM. How valid is the model behind cognitive behaviour therapy for chronic fatigue syndrome? An evaluation of the additional data from the trial by Prins et al. Bulletin of the IACFS/ME, 2010, 18, 2, 82-89.
Goudsmit, EM., Jason, LA, Nijs, J and Wallman, KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: A consensus document. Disability and Rehabilitation, 2012, 34, 13, 1140-1147. Online 19th December. doi: 10.3109/09638288.2011.635746.
Howes S, Goudsmit E, Shepherd C. Myalgic encephalomyelitis (ME). Criteria and clinical guidelines 2014. Available from: http://www.axfordsabode.org.uk/me/mecrit2014.htm
Howes, S and Goudsmit, EM. Progressive Myalgic Encephalomyelitis (ME) or a New Disease? A Case Report. Physical Medicine & Rehabilitation- International, 2015, 2, 6, 1052. Online 9th July. http://austinpublishinggroup.com/physical-medicine/online-first.php
Goudsmit, EM. Uitputtingsslag rond vermoeidheid. Spiegeloog, 1997, 24, 236, 14-16. (In Dutch).
Goudsmit, EM. ME and CFS: why patients and doctors disagree. BSAENM Newsletter, 1998, 7, 1, 8-9.
Goudsmit, EM. New research on the second generation. Second Generation Voices, 2000, 15, 20-21.
Goudsmit, E. It’s medical science, Jim, but not as we know it! The distortion of evidence relating to CFS. AAA Essay Competition, First Prize (Category 2). 2000
Goudsmit, EM. Post traumatic stress disorder: genuine illness or convenient excuse? Second Generation Voices, 2001, 18, 3-5.
Editorial bias in the Lancet. ME Research online, 2005. http://freespace.virgin.net/david.axford/melist.htm
Dancey, CP and Goudsmit, EM. Stress causes IBS? If only it were so simple. Gut Reaction, 2008, 72, 6-7.
ME or CFS: that is the question. Foods Matter, 2012, 71. Online 21st Oct.
Classic ME: the basics. Foods Matter, 2012, 71. Online 21st Oct.
Howes, S., Goudsmit, E and Shepherd, C. Myalgic Encephalomyelitis (ME). Criteria and clinical guidelines 2014. [Internet] 21 January 2014. (In two comments) US National Library of Medicine. NCBI Resources. http://www.ncbi.nlm.nih.gov/pubmed/21777306