Update Autumn 2016

The Summer wasn’t quite what I’d hoped.  It wasn’t terribly warm, I didn’t experience my usual response to sunshine when there was some, and my illness progressed, landing me in what I know is pretty much the last stage.  That’s when the digestive system suddenly becomes sensitive to foods you’ve had no problems with before. In my case, my mouth began to burn when I ate rice cakes (organic) and then, I experienced the same reaction to plain boiled rice. I’d depended on this grain, not only for sustenance, but also for fibre. The loss of rice left me dependent on potatoes in its various forms. I was advised to eat oats, but I don’t like the taste and the aren’t terribly filling.  My innards don’t like corn. The end result has been almost constant hunger.  I might get through two lamb chops, a large baked potato, a portion of beans and a banana, but within half an hour, I feel those pangs again.  It’s frustrating.

Problems piled up, one after another.  Listing them is just depressing. Unfriendly and unsympathetic doctors (so no referral to a State dietician), carers who left without warning and I generally felt weaker and more dizzy.  I struggle through shops, feeling weak and unbalanced. The exertion makes me feel ill for days.

I have a recurring thought which is ‘what is to become of me’.  I feel as though I’m standing at the top of a cliff and people keep pushing me towards the edge. There is little knowledge of this illness so no protocol as you’d find if you had the diagnosis of cancer of MS. I recall a patient who had ME and then suffered a stroke.  She compared the help she received after the latter: nurses, meals on wheels; everything she had also needed  during the ME days but wasn’t offered.

Sandra Howes and I had written a medical paper on Progressive ME to educate and inform but strangely, groups have not taken any notice.  Severe ME is not described accurately in the patient literature and there’s virtually nothing in the medical journals. Are groups afraid that the subset with the progressive form will scare the rest of the patients?   People diagnosed with MS will quickly become aware of a progressive subset and ‘what might happen’. Why should individuals with ME be kept in the dark?  ME is more than tiredness. We’re not the worried well. ME can be scary but it’s even more scary if there’s no support system to help you, should you be unlucky and end up at the edge of the cliff.

We’re a small subset but at the moment, we get neither the attention we need so GPs can recognise the challenges we face, nor the resources to manage our disability, e.g. from the NHS and Social Services. Ignorance is not bliss. Each of us has to find answers from the internet. It’s ridiculous.

I’ve written elsewhere about the doctors and the officials who don’t do their job well. Who send you from pillar to post to get access to your medical records. And the regulators like the Health Ombudsman who don’t really regulate. Who decide that making decisions about treatment based on incomplete information is perfectly fine. That’s what I mean about feeling as though you’re being pushed towards the edge of the cliff.

Last week, I bought a diary for next year but once home I thought, why? I might not be here next year. Still, I’ve got two now. I’ve also bought some Christmas presents for others.

One positive is the pride  I feel realising that I managed to keep going for 61 years, despite an illness I was apparently born with. So I might have been slow sometimes, e.g. in working out that I’d feel less weak and wobbly if I were to transverse campus in a wheelchair, but I was 18 and the doctors didn’t respond to my main symptom.  I must have mentioned it numerous times but I didn’t see a neurologist until I was a postgrad in Holland. He was an avuncular Freudian, who quickly psychologised my illness. As psychoanalysts tend to do. Still, it’s been a struggle and it’s still a daily struggle. I’ve done well in the circumstances but without more knowledge amongst medical professionals, most of us will be on our own. Too close to the edge.

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What happened to the empathetic physician?

A few weeks ago, when my itch became more chronic and I couldn’t find detergents and moisturisers  etc that didn’t make my skin burn, I asked to see a dermatologist at my local hospital.  I went to the appointment and saw a middle aged man who looked like a consultant. He saw my neck brace and asked what it was for.  Explaining that it prevented positional vertigo, he said ‘you shouldn’t wear that. I’ve had severe dizziness and that’s the wrong thing to do’.  ‘What helped your dizziness? ‘ I enquired.  He couldn’t recall, except that it started when he was cycling. ‘How did you get home’, I asked, having had the problem myself.  ‘I can’t recall that either’, he replied. A friendly start.

 

I went on to explain that I had severe itching, that it seemed to be triggered by soap and detergents, that I had run out of alternatives  and that I wanted him to check an itchy, bleeding, rough mole on my back. I added that the itchiness had first appeared 20 years ago after the removal of a DCIS but I felt there was no time to note that it got worse after a subsequent operation for a benign polyp. Nor did I mention that I also itched after touching certain materials, like cotton sheets.

 

Without examining me, Dr Bradley (I didn’t know his name at the time) decided that my itch was due to the stress of having had cancer all those years ago.

 

The problem was that I didn’t have cancer. A DCIS is a lump which can become invasive cancer but mine was low grade and never threatened my life. No one at the time described it as cancer. And the treatment wasn’t half as stressful as the vertigo which I’ve experienced since I was about eight.  Anyway, various consultants had already explained the sensitivities which appeared after the operations as an uncommon adverse reaction to the general anaesthetic. (Hence it worsened after the second one.) The medical literature also notes more complex causes than mere stress. But Dr Bradley wasn’t having any of that. I mentioned that I was a psychologist and that I really didn’t think my itch was due to stress, but he rejected that. And that wasn’t all.  He offered no suggestions as to management, except to avoid soap and detergents.  Then he  checked my mole and pronounced that it wasn’t sinister.

 

I got up to leave and put on a plastic glove to open the door. Hospital doors are the place to pick up bugs like norovirus and flu and if you can’t wash your hands with soap, or have to limit your exposure to cleansers, a glove comes in useful.

 

He wanted an explanation. It felt odd having to explain to a doctor  how bugs are spread, e.g. by touching doorknobs, but he insisted. So I referred to the risk of picking up bugs from the door, not being able to wash my hands, so like the queen, I protected myself with a glove.  I saw from his  expression that he didn’t accept it as a valid reason to wear a glove and having already noted that he had psychologised my itch, I felt that I was being judged on the basis of non-scientific factors. Like the fact that I was a women, or a psychologist.

 

When I read his letter to my GP, I discovered that he had  attributed my itch to a ‘basic psychological aetiology’ but had not detailed why he had reached that conclusion.  So the letter did not refer to his stress theory. In short, he claimed that the itch was ‘all-in-the-mind’. It’s what ill-informed lay people might suggest, but a physician knows that almost no illness is purely psychological.  And as for the use of a glove, he described this as evidence of rather obsessive behaviour. The man clearly didn’t know much psychiatry (or immunology).

 

Having read the letter, the GP’s attitude to me changed. The itch was a non-symptom. I was half expecting her to recommend I find a boyfriend.

 

The consult with Dr Bradley  with it’s sequelae, made me angry. I expected a consultant to examine me, perhaps do some tests to ascertain which detergents I was sensitive to, and to respect my views on stress, given I was more expert on this than he was. He’d behaved in an unprofessional manner so I looked him up in the GMC register. It’s then that I found out that he wasn’t a dermatologist. He wasn’t even a specialist.  He was a GP. I’d been deceived. I’d gone from seeing a GP who wanted a specialist opinion,  to seeing a GP who had even less knowledge than I did.

 

I submitted a letter to the GMC but their response was as expected. I had not been deceived as some GPs have special interests and the diagnosis was an opinion. A stupid one, but there’s nothing wrong with having stupid opinions.

 

The commissioning service who had hired Dr Bradley was just as unhelpful. They didn’t care that he wasn’t very good at his job but the head of the complaints department did contact a GP to refer me to a proper dermatologist. And so I ended up seeing a kind man who examined me, did tests, organised more tests and offered me a more realistic diagnosis. No simplistic psychological theories. The only negative is that I won’t be tested until next year.

 

I responded to Dr Bradley’s letter by asking for my comments to be added to my notes, both at the GP surgery and the hospital. However, I’m still baffled and rather angry at the low standard of care and the insulting approach to me as a health professional. Standards have slipped and the regulators don’t mind. They write in brochures about respecting  patients but they don’t. How the NHS has changed.

 

It was the same with Dr Ben Wright. He’s a neuropsychiatrist whom I talked to on the phone during my efforts to get some counselling or CBT.  I felt I needed support to reduce the increasing distress related to the progression of my illness.  Dr W convened a meeting with social workers who hadn’t seen me in years, a physio I couldn’t recall, a community matron who had come to my house and had nothing to offer, and my GP. As I were to find out much later, Dr Wright determined that I was not as ill as I had claimed, that I could travel to the other side of the borough in ten minutes (in real time, it takes 45)  and only for physio.  But I already had physio.  I wanted someone  to talk to. Whatever this illness is, it has left me increasingly sensitive to foods and materials so I have difficulties tolerating new bedding which is a problem as I am currently suffering from back ache due to lying on an old mattress,  and neck ache due to the wrong pillow. Today, I ate rice cakes from a new pack and my lips and tongue began to burn.  I can’t wash my clothes in normal detergents as that causes an itch. I could write a book. All that and dizziness too.

 

I realised the damage that the meeting had caused when I saw my (previously) supportive GP and discovered that he agreed with Dr B.  I might feel dizzy but had managed, on flat boots, with stick and carer, to get to the surgery. So why couldn’t I just go shopping, or to a hospital 45 minutes away? As for counselling, his response can be summed up as ‘we can’t always get what we want’. The Health Ombudsman, a lawyer, sided with Dr B and would not entertain the idea that he had based his unsympathetic and useless opinion on incomplete information.

 

I really needed a counsellor and as the NHS would not provide one, I found a lovely person in the private sector.  She asked me what my main issue was.  I think it’s fear.  As the symptoms increase and new ones arise,  my thought is often ‘What is to become of me’.  What will I not be able to tolerate or eat next. Without help,  I feel trapped.

 

If you’re distressed because you have a progressive, incurable and little understood disease, being told by a doctor that ‘you’re not that ill’ is hardly sympathetic. I feel for those with depression who can’t get counselling for 14 months. And I now know that the mantra that ‘you’re not as ill as you claim’ wasn’t personal.  Others have also had that said to them as a reason to deny them treatment.

 

Life can be tough. A supportive network at such times is essential. Losing my lovely GP was sad and all because Dr W and others made decisions based on incomplete information. And perhaps a little sexism? To have had two ‘unhelpful’ doctors was bad luck. But that’s life in 2016.

 

NB. Paper on Progressive ME*.  Sent it to researchers who have been doing MRIs on  patients with  ME for over 6 years. (Shan et al.  J. Magn. Reson. Imagining, 2016. April 28thdoi: 10.1002/jmri.25283).  Wrote to main author who thought my MRI results were consistent with their findings. So perhaps Sandra and I have found something.

*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/all-issues.php

 

On the positive side, I’m proud that I challenged the psychobabble re ME since the latter 1980s and wrote many articles on the flaws in CBT and GET trials since 1996. It was not the way to make friends and influence colleagues but it was the right thing to do.  And perhaps soon, the statisticians who will examine the raw data from the PACE trial will show that I wasn’t far off the mark.

AND NOW FOR SOMETHING COMPLETELY DIFFERENT

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.

  1. 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

Ellen Goudsmit

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?

Season’s greetings!

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 (ellengoudsmit@hotmail.com)

  1. 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.

  1. 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.

Email text:

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.

Yours sincerely

Louie Ramsay.

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.

  1. Claim that I lied about having a Masters degree.

They wrote:

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

NARIC 2

NB I obscured part of my address for obvious reasons.

From NUFFIC

NUFFIC p2

  1. 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” <jk13@york.ac.uk>

To: “‘Ellen Goudsmit'” <ellengoudsmit@hotmail.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.

Whiting page

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: ellengoudsmit@hotmail.com

Dear Ellen

Your thesis has been digitised and should be among the theses that will be available when EThOS goes live next Tuesday.

Best regards

Carol

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.

http://www.bpsshop.org.uk/Health-Psychology-Update-Vol-18-No-1-2009-P797.aspx)

    The original London criteria p1

London criteria

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.

Ellen Goudsmit

APPENDIX I

Not quite the criteria I helped to formulate.

London_Criteria_in_PACE_Trial

APPENDIX II

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.

From SR.

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. 

Sincerely,

S.

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.

Appeal without names

 

APPENDIX III

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.

Books:

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.

Articles:

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.

http://freespace.virgin.net/david.axford/JCFS.pdf

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.

http://www.iacfsme.org/BULLETINFALL2008/Fall08GoudsmitFatigueinMyalgicEnceph/tabid/292/Default.aspx

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.

http://www.informaworld.com/smpp/content~content=a903527516~db=all~order=page

Goudsmit, EM., Stouten, B and Howes, S. Illness intrusiveness in myalgic encephalomyelitis. An exploratory study. Journal of Health Psychology, 2009, 14, 2, 215-221.

http://hpq.sagepub.com/cgi/content/abstract/14/2/215?etoc

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.

http://www.bpsshop.org.uk/Health-Psychology-Update-Vol-18-No-1-2009-P797.aspx

Translated into Dutch and published in Lees Me, 2010, 10, 4-47. Updated by EMG in 2012 and published online (2012, 21st Oct):

http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-clinical%20entity-10-12.html

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.

http://www.iacfsme.org/BulletinArchives/tabid/309/Default.aspx

http://www.iacfsme.org/BULLETINSUMMER2010/tabid/432/Default.aspx

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.

http://informahealthcare.com/doi/abs/10.3109/09638288.2011.635746?prevSearch=allfield%253A%2528Goudsmit%2529&searchHistoryKey=

Author: http://www.tandfonline.com/doi/full/10.3109/09638288.2011.635746#.VcuOCZXbLcs

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

Misc:

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.

http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-or-not-me-10-12.html

Classic ME: the basics. Foods Matter, 2012, 71. Online 21st Oct.

http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-classic-10-12.html

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   

Update. MRI findings suggest what?

Leucodystrophy. A word on a MRI report. Lesions suggestive of leucodystrophy. GP doesn’t know so google it. Have an ‘oh dear’ moment. I tick a lot of boxes but it appears to come in many forms, so need tests to see which one. It’s incurable and fatal in the short or medium term. It’s also genetic. The end seems to be a combination of MS and MND. Lose physical and mental functions.

When I rang GP, he was busy so I was diverted to duty doc. She didn’t understand why I had not been told the news by a neurologist at outpatients in an office (appointment is in two weeks time, he would not see me without MRI and you can get reports sent to you.) I felt a little shocked (I used to be in half denial, thinking I’d feel a lot better if I could limit stress). Expecting a few choice words of comfort, I was told that the NHS does not offer emotional support: I should ring the Samaritans.

This whole thing was a disaster. I first asked for my annual MRI in August, knowing that the whole procedure of getting one on the NHS might take 6 weeks. It was during a visit to my GP. He forgot. I then asked a duty doctor, who would talk to my GP. Still no appointment. I visited a duty doc as my GP was booked for three weeks and she would arrange it. She didn’t. Another chat to a duty doc. In short, I had three visits to a doctor and five chats on the phone before I got my referral and then found there was a long waiting list, which would mean I would not get one until after the appointment with the neurologist. Which would have to be cancelled unless I developed a new symptom he could discuss with me. Next appointment; in January.

I asked a physio to refer me for a private one, which she did, and thus got the report in time for the neurologist. Now we have something to discuss. I’m making a list.

Another consequence, aside from finding out that my GPs only do lumps, warts, and urinary tract infections, is that I shall have to rewrite my case history. I’ve already sent it in to a medical journal and it’s being refereed, but now it appears to be wrong. I don’t have a cross-over between ME and MS but something in the textbook, albeit obscure, and the ME, if I ever had it, was just a co-morbid disorder. It’s probably not what is causing all the neurological problems.

Progressive ME is a dangerous condition. It may mask or represent something else. I’ll only have to add the latest findings and change the conclusion.

At home, I’m saddened at the lack of help and support. Mum is getting more forgetful and she’s not happy. We could do with more care. Someone to help run the house, mend taps, replace faulty lights etc.

A few weeks ago, I found the fridge of the door open. It had been open for several hours. It was Friday afternoon. I could no longer trust the meat in the fridge was safe to eat. Fortunately, I wasn’t dizzy so ordered a taxi and found myself in Waitrose and M & S at about 4.30 pm. It meant mum and I had something to eat during the weekend.

Well done, me. Kept mum and me safe. Had to remake soup. I’d have preferred to rest and spend the last hours of Summer sitting in the sun but needs must. Nice to see others pop in for a chat but I miss a ‘can I get you anything’ before a visit. It’s frustrating when people come to see mum, telling her they’ve just been to Waitrose, and we could have done with something from, erm, Waitrose.

Don’t know if I have leucodystrophy. But it’ll be something like that. At least, it’s not somatisation disorder and should anyone ever mention it again, I’ll take them to the GMC or throw a glass of water over them. Incurable, fatal diseases have that effect on you.

This week, the SSD (one year old) needs replacing. That’s a complete re-install. How I hate those. But one things I do want, now, is a stable computer. Just one. And a working TV and recorder, so I can watch the progs I miss when I’m at the doctors or dealing with tradesmen. A good corded telephone for the office would be nice but the Amazon reviews for most are not great. And a comfy bed. Just the basics. Looking for them takes time. I should rest more but when?

Apologies for typos. Hope you get what I am trying to say.

Update April 2014

I’ve lived longer than I thought. This afternoon, it seemed like the end, when my brain stopped and I had a sort of seizure. I was calm and it subsided but I still don’t feel right.

I’d spent a busy weekend helping a friend deal with a noisy neighbour, which involved talking to solicitors, reading tenants agreements and the text of two Acts, then drafting a letter of complaint. My poor eyes.  It meant no rest and changing plans. 

Same today. I found my old silver spoon, given to me when I was a child, lying heavily tarnished and scratched in the kitchen.  Person X had apparently been trying to polish it, without success, for two weeks.  I tried, googled, and eventually bought a silver cleaning solution from Amazon.  That should come in the next few days.  Why does a person not take care of things that do not belong to them? Why not inform the owner that there’s a problem so it can be dealt with?  If the solution doesn’t work, it will have to go to a specialist shop.

It’s not the cost or the time I’ve wasted this morning that bothers me.  The work isn’t great for my brain but it wasn’t any old spoon. It has sentimental value.  Then I found that the new cover for the rotary clothes airer in the garden  had been taken from its bag and placed on the dryer.  It fitted (hoorah), but the bag with the details and invoice were nowhere to be seen.  Person Y had been very efficient but thrown the bag away: complete with information about the ten year guarantee etc.  As for the invoice…  Do other people not keep receipts etc for goods with a guarantee? I’m glad I noticed as quickly as I did. I printed off a copy of the order from Amazon and placed it in the bag, in the garage.

I’m all for decluttering and tidying up but sometimes, it goes wrong. When I throw rubbish away (e.g. place junk mail on the ‘rubbish’ pile in the kitchen for removal to the recycling bin in the garage), it sometimes returns to the kitchen table on the ‘to be sorted’ pile,  or it’s left on the chair outside my bedroom. It’s a good thing to check but this was true junk.

In short, for hours, the body and eyes had a lot of searching to do. For advice on the net, invoices etc.  I wasn’t able to rest and this afternoon, the brain said ‘enough’.  I should have gone to the hospital appointment with mum  but the brain clearly couldn’t cope. Her carer went with her and I’m pleased to say, it was good news.

Looked through some fashion mags that came and realised that my deterioration meant I couldn’t shop and try things on. I don’t have a skirt, my T-shirts are old, and I’m depressed. One of the sandals I had made is too tight with the insole glued in (not present when I was measured). The last time I was able to shop was last August. On the positive side, no crown has fallen off while I’ve been so low. Perhaps I should be grateful for small mercies.

Additional anxiety

I don’t know if I’m angry or depressed, or both. I got a letter for a follow-up appointment for two weeks’ time. When normal practice is t do a mammogram, an ultrasound and either drain a cyst or do a biopsy of a solid lump, and then see a doctor, I had the mammograms and an ultrasound. I kept asking where the pain might come from but got no answer. Nor was I able to find out if or when I could see the doctor. Apparently, they wanted to see the 2011 mammogram, and that might come in later that afternoon, or in two weeks. Elizabeth, my carer, decided we should go home. I was getting very tired.

So now I face at least two more weeks of anxiety. And pain. All who should know, do know. I think it’s cruel. Why not do what they always do, complete basic tests, give preliminary diagnosis, and if they see something on the new mammo compared to the old, recall me. But who would take over? I’ll get the Kingston mammograms on Tuesday. They won’t need to be repeated. A hospital further away. Cruel.

Lumps and more lumps.

It was Friday just after five. Start of the weekend. Aside from the dizzy spells, things weren’t too bad. I was looking forward to a quiet two days. Then suddenly felt a pain in my breast. I felt for a lump according to the usual rules but couldn’t find one. Pain seemed like that of a premenstrual cyst in my younger years. Bound to go, I thought. Must have bashed it against a door. Better tomorrow. Except it wasn’t. It was worse. I sat down and had a feel. There was a lump. Small, smooth and movable. Like the DCIS from 17 years ago. I know what one has to do next. Mammogram, ultrasound (US), possibly a biopsy. Rang Coombe wing but the one-stop clinic on Tuesday was full. Could I wait till Friday? No.

Saw lovely surgeon today at a diagnostic clinic except the ladies doing the US and mammograms weren’t there. It’s still holiday time. He found the lump in the armpit. That means pain, and two lumps where there should be none. I rang Breast Cancer Care if there were benign conditions which present like that. Not really.

I went to the clinic thinking I might have a DCIS as I’d had regular mammograms and nothing for 17 years and left having to consider invasive cancer. Trouble is that courtesy of the treatment for the DCIS, I can’t tolerate most drugs and smells. So chemo is out. Too exhausted and dizzy for radiotherapy.

It’s hard to be positive. I suppose if you can still find humour in all this, I can speculate which of my disorders will kill me first. I thought there was only one thing with a poor outcome. Tomorrow I’ll know if there’s a second one.

At home, I found that the DVD recorder had not recorded the programmes I wanted due to lack of space (it has 250 GB) and then I felt a sharp edge on the inside of an onlay. This has definitely not been an enjoyable day.

Tomorrow at the Cancer Centre, at 9.00 am.

Tall poppy syndrome: a theory

“Tall poppy syndrome (TPS) is a pejorative term primarily used in the UK, Canada, Australia, New Zealand and other Anglosphere nations to describe a social phenomenon in which people of genuine merit are resented, attacked, cut down, or criticised because their talents or achievements elevate them above or distinguish them from their peers.”

 

“Some sociologists, notably Max Weber, believe that in certain social groups, the acquisition of prestige and power is a zero-sum game, and this situation may provide a rationalization for the hatred of “tall poppies”.[9] In such groups, there is only a limited amount of prestige for its members to share in and only a fixed quantity of attention, authority and material resources that its members can give to each other. Status is a relative value, so for someone to rise in status, another person must fall. A person who is more prestigious is an obstacle to another person’s rise simply by being more prestigious, and a person who suddenly rises is an outright threat to the other’s current status. Humiliating or sabotaging a popular member of the group will lower that person’s status and thus make it possible for the aggressor to supplant him in the group hierarchy.”

 

Or from the Daily Telegraph 17th April 2013: “Miranda Richardson, actress and chair of judges, said Mantel thoroughly deserved to be on the short list of six female authors for this year’s prize, despite her previous success and healthy sales.

She added Britain too often indulged in “tall poppy syndrome”, where people felt those who already had too much success should “go away and die now”.

 

From Collins dictionary: noun

  1. (Australian, informal) a tendency to disparage any person who has achieved great prominence or wealth.

I’m not a tall poppy but was probably perceived as such by the cyberbullies, aka ‘gang of four’. I was reminded of this by people who wanted to know about me and googled my name, only to find those posts with the allegations and  insinuations. I asked one of the people who knew me personally, how the posts  made me appear.  ‘Not good’ she said. ‘I know you so I realise those people are crazy, but if someone doesn’t know you…”

 

Why did I became a target for the gang of four in the mid 90s and especially 2001 and 2004?  What had I done? I had never written that ME didn’t exist, that it was largely psychosomatic and the most effective treatment was CBT.  I had not collaborated with any researcher expressing those views. I had been diagnosed with ME.  When they attacked me, they were not  criticising an individual who rewrote history and psychologised ME.  Indeed, I was the first scientist to challenge the psychologisation of ME and write about it. But I had been in the press and on radio and TV.  I was an ‘expert’ on the illness at the time. I’d read almost every article ever published on ME. I bore the cost of those papers, ranging from about £15 to £45.  Given I had no income, I paid the fees from my benefits. After a few years, I had over 3000 articles.  You do the maths.

 

Having come across ME in the early 80s, I realised that many patients were being misdiagnosed, often as hysterics.  I became aware that their treatment was generally punitive (negative reinforcement etc), so people were placed in solitary confinement, dragged out of bed even if they had a temperature, made to clean up their own vomit and so on. Yet the literature from the early 1930s gave the impression of a viral infection which damaged multiple  organs.  I lived in Holland at the time and approached the NTvG, the Dutch medical journal, who didn’t want to know. The attitude was, ‘what does a slim, female psychologist know about infection.’ So off I went to the magazine VIVA whom I had helped with research on PMS and PND.  They were willing to publish an article on ME but only if there was a Dutch doctor who could treat the patients and a support group who could deal with enquiries. And they wanted to wait until there was an American article on ME.  They felt uncomfortable about being the first.  

I only knew of one other patient with ME at the time, Marion, a fellow psychologist who asked me one day why I was so immobile and when I told her my symptoms, she recognised them as those she suffered from herself. She agreed that ME needed more publicity, and while we waited for that American article, Marion set about forming the charity while I started reading up on ME and passing the information back to her. Then I became too ill to live on my own so returned to London and mum’s chicken soup.

 

In the UK, I also approached papers and informed them about ME.  Unlike VIVA, they didn’t have to wait for an American article.   The Telegraph was happy to write about ME, but alas, I was to be their featured patient. I had a very painful abscess at the time  but there was no alternative and people were suffering.  The Evening Standard also wrote a piece, mentioning me as a source of info. Around the same time, the Observer published something , basing their article on someone else. This resulted in the formation of AFME. I  was asked to help and advise. Within a short time, my knowledge of the literature meant that  many people would ring me for info, even on Sundays. Few credited me as a source but it kept me busy.   I ended up as Chair of AFME’s Research Working Group who decided on studies to fund and helped to formulate the first research criteria for ME.

 

I’d learnt a lot from Drs Ramsay and Dowsett, so after a few years, had a fairly accurate  idea of ME and the research. The press contacts at the MEA and AFME increasingly referred journalists to me, so people got to associate me with the illness. To some, I must have seemed a tall poppy.  ‘It’s all about you, isn’t it, Ellen’, someone emailed me once. He obviously thought I was motivated by fame or financial gain.  But I wasn’t famous, as so few scientists are.  And I gained nothing  financially from the work.  I lost a lot, and the effort just made me much more ill.

 

In short, someone in the late 90s decided that I needed taking down a peg or two. more and more emails began to questions my motives and knowledge. I was accused of collaborating with psychologisers. There was a slow but concerted campaign to incite ‘severe dislike’.  And it worked.

 

People who don’t know me refuse to include me in committees now on the basis that I am totally inflexible and so biomedical that even if there was incontrovertible proof of a psychological cause, I wouldn’t accept it (see book by Friedberg).  It’s not true but he’d listened to rumours. Had he actually read any of my articles, he’d have known that I haven’t got a clue as to the cause of ME but am  unpersuaded by the current psychological explanations, attributing symptoms to a lack of activity and fear of minimal exertion.

 

Instead of asking me if a particular interpretation of psychological research is valid, groups ask a chemist and other people with no expertise in psychology and guess what, they often get it wrong. The lay interpretations are easily dismissed by those who promote a psychological view. But the tall poppy, with the expertise, has been discredited and people don’t  really ask if what they read on the net is accurate. Group think plus.  A lot isn’t accurate. 

 

The angry gang don’t just attack me. I’m one of several.  However, some have revisionist views so I can understand where the anger comes from.  But the gang of four know my background so the falsehoods about me  are deliberate attempts to remove me from the ME world. 

 

There’s nothing I can do about it. My work on ME has identified the flaws in the psychological theories and treatments. It can be cited to argue for more biomedical research. I’m still not famous and it’s a waste of time and effort to continue to try and educate, clarify and inform.  So few listen. Last week, one of the gang of four (who tried to get me struck off) got an award for his efforts for the ME community.  Admittedly, he worked very hard, but he was healthy. I worked hard but it just made me dizzy for months. And I always tried to avoid personal attacks (acknowledged by Lloyd in the Journal of Internal Medicine a few months ago) .

 

The tall poppy was cut down to size but is anyone with ME better off as a result?

 

Update

I’ve had a few good weeks when I had more balance, no sudden attacks and I was able to go out again. Then two days ago, after an increase in stress and activity, the monster returned. I feel back at square 1. Can’t cycle, don’t feel happy going to appointments. And I’ve got a number of appointments, not least the MRI of head, neck and spine (one hour in a noisy toilet roll) and the fitting of a crown on a tooth that doesn’t like crowns. It was retreated ‘as a precaution’ but after that, it became symptomatic. It hadn’t been since 1980.

There’s nothing on the X-ray (there usually isn’t), but the fiddling and strange shape caused great pain last time. I hoped that it would settle, but it hasn’t. The notion of an extraction looms. And then what? A root canal for the tooth in front so it can be crowned and a crown fitted next to it, to replace current tooth?

We’ve had help but it’s been a surprise just how few people know basic hygiene. After washing hands before touching food, and cleaning, they don’t know, for example, not to pile up damp cloths on top of one another (breeds bacteria), or that it’s not a great idea to leave food outside a fridge for longer than an hour and a half. I asked someone to avoid the basin as my home made soup was cooling and after a few minutes, came downstairs to find water being filled into a far from clean object. Ofcourse it splashed on to the soup and although the lid was on, there is a space between the pan and lid for liquid to flow. Into my soup. End of soup. I couldn’t take the risk. You can kill most bacteria by boiling but you can’t kill certain viruses, let alone spores. After the hours spent making the soup, I was dejected, to put it mildly. My fragile brain lost it and I realised that I was swaying and about to lose my balance. So I took some diazepam and sat down. The attack itself rarely lasts long but there is usually a residual imbalance, especially when sitting up or standing. And I so wanted to go to Kingston to find some clothes.

In the past few weeks, there have been a number of little traumas, like the death of my external disc (a sudden high pitched sound marked the beginning of the end, after only five months of use. All my backups gone). Then one morning, I switched on my trusty Dell only to hear another high pitched sound (after booting, before it went into Windows). It’s with the IT expert. Windows 7 is proving less than stable. Yesterday, it refused to print one email. I forwarded it to myself and lo and behold, that would print.

Working on the computer makes my eyes and imbalance worse so I can’t spend much time writing and reading anymore. Only two of my test questions for the MRCPsych exams, out of four, was accepted (that £20), without an explanation as to why the other two were not right.

I’ve completed the funeral plan but not the text for the headstone. Lost contact with the mason. Need a new one. Actually, quite a number of people were going to ring back and never did. Or the phone is playing up and tells the enquirer that ‘this number is unavailable’.

I’m still sad that ME groups are not focusing on research into ME. They are funding studies using criteria which select a broader group. They are not heeding my advice and thus wasting money. I did the RCGPs’ course on ME/CFS and saw patients talking about being tired and under the weather. If that’s ME, I’m the Pope.

At least my Europsy certificate came. But, following Sod’s law, the postman didn’t heed the request ‘please do not bend’. It sort of sums up my life in the past few years.

Tomorrow I need to see the endodontist to get his opinion of the not-yet-crowned molar. I’d have loved to feel stable and perhaps pop over the road to the department store with a large range of dresses. When I have little balance, just moving feels seriously grotty. Once I coud calm my rotating brain with medication. Now that has little effect.

Life is a bitch….

It’s Spring.

I’ve had a reasonably good morning after several weeks of extreme dizziness and bladder problems. Yesterday, I felt particularly weak and found my blood pressure was very low (89 over 54; that’s low). I drank some coffee to try and get myself going again.

 

I had planned to write about the continuing journey on a road no one wants to follow;  to a destination no one wants to be. Thoughts often came late at night, at a time when the computer was off and I was too dizzy to check what I’d written.

 

It comes down to the end of life scenario. I’m not depressed; I have come to accept my lot. I’m frustrated in that I want to go shopping for clothes, shoes and stationery. And dare I say, Hello! I was able to do that in August but now I struggle to walk around the house. I wish I knew what caused the change.  However, I have not followed the accepted stages, except for the odd anger at a system that can’t cope with special needs, or as in the case of Lloyds, is delaying paying me a refund for a faulty computer. I could write a book full of excuses.  I don’t know the law re Section 75, nor do Consumers Direct, nor do the lawyers at Which? They don’t have to refund me. According to Lloyds Mastercard, the seller does but they won’t. Even the bank manager was not able to get them to hurry up.

 

The home visiting hearing people and optician found little, so that’s a relief.

 

The end destination is peace.  The path there isn’t. It’s like climbing Mount Everest.

 

I think still about my legacy. I’m surprised it seems to matter to me. I see the odd note on YouTube and other places, thanking me for the work I’ve done. Will has been checked.  Arrangements changed. Nice coffin in TeddingtonCemetery with my degrees.

 

As an uncle wrote: enjoy what there is to enjoy. In the past week, that’s been ‘Mirrors’ by Justin Timberlake. Probably not politically correct but hey, give me a break.