Wikipedia pages for Simon Wessely & Michael Sharpe could be updated to include a summary of the George Monbiot Guardian article & link in reference section. Is it something any of the S4ME members are able to do?

There's a whole long controversial and murky history to Wessely's Wikipedia page. It's very tightly controlled and it's very difficult to get anything past the editors, who are all of course completely unbiased and not at all taken in by the 'ME activists' myth.
 
Copied to thread on Shorter
the booklet "Quotable Quotes"
This has just reminded me of something. Many, many years ago I posted a bunch of "bad ME quotes", derived solely from my own reading, to a now-defunct Google (or was it Yahoo? or maybe even Usenet?) group. I think there may be some limited overlap with Williams' quotes, but plenty of "new" ones too.

Posting it in the forlorn hope that it might help to inform some future exploration of the profound epistemic injustice we face.
"From the psychiatrist’s perspective it is parsimonious to ask whether a diagnosis of CFS is ever necessary or appropriate when the symptoms can always be described by a psychiatric diagnosis? This unsatisfactory situation is an artefact of parallel medical and psychiatric diagnostic systems for patients with somatic symptoms unexplained by disease. Consequently whether one uses a ‘medical’ diagnosis of CFS or a ‘psychiatric’ diagnosis of somatoform disorder is merely a matter of choice." (Wessely & Sharpe, NOToP, p1038)

". . . Wessely considers the natural history of chronic fatigue and myalgia syndromes, which are becoming increasingly fashionable. He considers that such disorders as myalgic encephalopathy, post-viral fatigue states and chronic Epstein-Barr virus are the true heirs of neurasthenia - and serve the same social purpose. Both the patients and those making the diagnoses believe that the patient is suffering from a physical illness, so there is an avoidance of guilt and blame despite the fact that about two-thirds of such patients satisfy diagnostic criteria for depressive illness." (Goldberg & Sartorius, PdiGMS p3)

"Just when you thought a stake had been driven through the heart of Chronic Fatigue Syndrome (CFS) (link is external) it comes roaring back, propelled this time by a committee of the Institute of Medicine (part of the National Academy of Sciences). It’s a committee that the CFS patients’ lobby has roped, captured, and hogtied." (Shorter, PT, Feb 19 2015)

"The recognition of PVFS by the Department of Health can be viewed as an attempt to legitimise the sick role, and thus regard the chronic illness behaviour manifested by the patients within the ambit of 'normal' illness behaviour. Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the 'M.E. Society', which advocates total rest." (Woods & Goldberg, PFS p912)

"CFS came out of that whole brew of toxic beliefs about being tired all the time that arose in the 1970s; it became crystallized with the diagnosis “Chronic Epstein-Barr Virus Infection,” then morphed into Chronic Fatigue Syndrome (Myalgic Encephalomyelitis, or “ME,” in the UK). Finally, the wind went out of this particular sail late in the 1990s when it became apparent to the patients that nobody believed they had a distinct organic disease, as real as mumps, called “CFS.”" (Shorter, PT, Feb 19 2015)

"The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: 'The average doctor will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible' (Alvarez, 1935). Thus, attitudes toward psychiatric illness affect both patient and doctor with equally adverse effects on prognosis." (Wessely, PDiGMS/CF&MS, p90)

"There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be." (Shorter, PT, Feb 19 2015)

"In the context of fatigue states, the attribution is usually to an infective agent, especially a virus. This has been true since the discovery of such agents (Rabinbach, 1982), but it is of interest that the "germ theory" of nonspecific illness is gaining popularity among primary care patients at the expense of a decline in the acceptance of personal responsibility for illness (Pill & Stott, 1981). Such attribution conveys certain benefits, irrespective of accuracy. 'The cardinal attribute of terms is external.. There is no malevolence or "maleficium" involved' (Helman, 1978). In other words, there is an avoidance of guilt and blame (unless the germ is sexually transmitted)." (Wessely, PDiGMS/CF&MS, p92)

"Once sanctioned by a doctor, the symptoms are more likely to persist; the persistence of the symptoms is mistaken for confirmation of the diagnosis." (Woods & Goldberg, PFS p911)

"What drives this process? Patients hate having a diagnosis that nobody believes in; they dread the words, “Madame, it’s all in your head.” So, many CFS sufferers moved on to other delusional illness attributions, some involving the environment rather than the mysterious collapse of their “immune systems.”" (Shorter, PT, Feb 19 2015)

"Some patients may adopt safety behaviours that interfere with the experiment of increasing activity. These include walking very slowly, carrying a walking stick, and telling others that they are ill and not to expect too much. If they are to regain their belief in their own ability to function normally, these behaviours need to be dropped." (Sharpe, S&PoCBT p401)

"For many sufferers, ME appears to be an all-consuming political cause and a way of life. It gives purpose to an existence otherwise emptied of meaning. In this respect it resembles the wilder shores of feminism, or racism awareness, more than it resembles a disease." ("Dr Rodney Silver", aka Anthony Daniels/Theodore Dalrymple, The Daily Telegraph, Mar 30 1994)

"CFS lobbyists actually sat on the committee, and in the several public hearings the CFSers appeared in mass to pour out their tales of woe. In its report the committee emphasized that it is “taking into account the clearly expressed views of hundreds of patients and their advocates. Now, committee capture works like this: It is impossible to say to some woebegone victim – who has now become a committee colleague – “We don’t believe that your symptoms are caused by an organic disease.” The public hearings were a circus, with moaning and groaning victims right and left. How do you say to this kind of psychodrama: “We are scientists and insist on evidence other than the tireless repetition of your subjective complaints.”" (Shorter, PT, Feb 19 2015)

"Finally, the medical profession may adversely influence the course of the illness in two ways. . . second, by introducing new diseases. Creating new diagnoses may legitimize much of the above behaviour. For example, 'chronic brucellosis' has been described as a 'spurious disease construct which legitimizes and thereby perpetuates chronic illness behaviour (Eisenberg, 1988). The inevitable result is that the symptoms persist, so the diagnosis is confirmed, and the process continues. The successors to chronic brucellosis that appear in this chapter are inadvertently fulfilling the same role in many patients." (Wessely, PDiGMS/CF&MS p93)

"The tragic element is that becoming involved with a CFS advocacy group is a recipe for lifelong disability, further entombing the patients in their symptoms. Yet it is precisely the advocacy groups that are driving the whole carnival, that have captured this wacky committee of the otherwise august Institute of Medicine. This is the politics of health care at its worst: giving over to noisy advocates the responsibility for defining disease entities. It encourages patients to believe that they have a non-existent illness, and it intimidates physicians from making the correct diagnosis and ensuring that these patients receive proper care rather than Rose of Sharon Oil." (Shorter, PT, Feb 19 2015)

"Finally, attribution to a disease for which the person has no responsibility may function to avoid blame for being ill." (Wessely & Sharpe, ToFSS p292)

(PdiGMS = Psychological Disorders in General Medical Settings; CF&MS = Chronic Fatigue and Myalgia Syndromes; S&PoCBT = Science and Practice of Cognitive Behaviour Therapy; PFS = Postviral Fatigue Syndrome, BMJ47, 1991; ToFSS = Treatment of Functional Somatic Symptoms; PT = Psychology Today; NOToP = New Oxford Textbook of Psychiatry)
 
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Please could the folk here send me some links to articles written about Simon Wessely? I mean ones that call him out (not the ones that claim that the sun shines out of his arse.)

I have a friend in the media who'd like to do some private research on him. Thanks.
I would advise extreme caution. There are so many bear traps, including unreliable and unsubstantiated claims. If in doubt about anything, better to leave it out. The potential damage to us of publishing anything which isn’t 100% accurate exceeds any potential gain.

Be sure to read ensure that your friend reads SW’s own website to understand how he has used past criticisms to his advantage. In my view, his website is full of inaccuracies and misrepresentations – which itself could be the subject of investigation – but it’s important to be able to differentiate between what is valid and what is not.

There may well be accusations that have been made that are true but can’t be proven. In those cases I think it is usually better to avoid them as there are ample criticisms that can be made of his work without resorting to hearsay evidence.

I’m not sure if it’s in this thread but your friend might be interested to read my letter to the FT which references a paper by SW: https://www.ft.com/content/a2bd17a9-41fb-48fa-8fae-445ff22d6bae

Finally, I would recommend that your friend consults people on here – publicly or privately before publishing anything.
 
Yes, extreme caution is advised in making any critical comments about Wessely. He is a master sophist, and it is necessary to learn how to parse his words very carefully indeed, which requires a solid background on his work and methods.

For example, the history he writes on his site of his work is a case study of misrepresentation by omission and misdirection.
 
Answer to penultimate question:

http://www.parliament.uk/business/p...s/written-question/Commons/2017-10-31/110595/
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome: Health Education
------------------------------------------

Julian Sturdy

To ask the Secretary of State for Health, what plans his Department has
to mark International Awareness Day for Chronic Immunological and
Neurological Diseases on 12 May 2018. [110595]

Steve Brine

There are no specific plans at this point.

NHS England's Long Term Conditions Unit works with partners such as
voluntary sector organisations (including those with a remit on chronic
disease) to synchronise communications activity in line with many annual
awareness days. The NHS England media team may also provide support
through social media to maximise the reach of established campaigns.

On 12 May 1994 Wessely delivered the 9th Eliot Slater lecture at the building in Queen Square. London, the former site of the National Hospital for Nervous Diseases, where Slater worked in a senior position for many years.

The last words of his speech were this:

"For as long a psychiatry exists in the public imagination as it does now, then each generation will find it necessary to discover its own ME."

My response almost 30 years later is - Long Covid?

The year before, in 1993, this paper was published:

David A, Wessely S: Chronic fatigue, M.E. and ICD 10. The Lancet 13 Nov 1993;1247-8.

“The inclusion in the tenth revision of the International Classification of Diseases (ICD 10) of benign myalgic encephalomyelitis as a synonym for postviral fatigue syndrome under Diseases of the Nervous System seems to represent an important moral victory for self-help groups in the UK. ... it is unlikely to lead to advances in our understanding of the condition."

"The nineteenth century term neurasthenia remains in the Mental and Behavioural Disorders chapter under Other Neurotic Disorders. ... Neurasthenia would readily suffice for ME.”

“Applying more stringent criteria for CFS in the hope of revealing a more neurological subgroup succeeds only in strengthening the association with psychiatric disorders.”

“We believe that this latest attempt to classify fatigue syndromes will prevent many people from seeing the world as it actually is.”

From the book Shell Shock to PTSD | Military Psychiatry from 1900 to the Gulf War | (taylorfrancis.com) 2006

The Abstract for Chapter 9 states:

"While the diagnostic labels shell shock, disordered action of the heart (DAH), effort syndrome, effects of Agent Orange and Gulf War Syndrome have become familiar, considerable controversy has waged over their nature (Binneveld, 1997; Shephard, 2000). We, among many others, have argued that they should be classified as medically unexplained syndromes (Barsky and Borus, 1999; Bass, Peveler and House, 2001). These are characterised by a range of functional somatic symptoms, common examples being: Fatigue, weakness, sleep difficulties, headache, muscle aches and joint pain, problems with memory, attention and concentration, nausea and other gastrointestinal symptoms, anxiety, depression, irritability, palpitations, shortness of breath, dizziness, sore throat and dry mouth (Barsky, 1988). Despite popular claims to the contrary, no simple biomedical cause has been discovered to account for these disorders, hence the term ‘medically unexplained’ (Wessely, 1999b). Furthermore, they are not easily interpreted using accepted psychiatric classifications (see below). Without demonstrable organic cause, war syndromes have attracted diverse causal explanations, ranging from pressure on the arteries of the chest, constitutional inferiority, toxic exposure, bacterial infection and microscopic cerebral haemorrhage."

Attributed to Simon Wessely on the Goodreads website:

“It is very important for scientists to engage with the media – to ensure the public has access to accurate, evidence-based scientific information, to keep us ever-present in the minds of policy makers and funders, and to inform public debate.”

Shell Shock to PTSD | Military Psychiatry from 1900 to the Gulf War | (taylorfrancis.com)


I wonder what this 12 May awareness day will bring forth.
 
It's a pretty hard-hitting article by Hannah Sharland

A tweet in that article linked above:
Inquiry needed The only issue is that Wessely has planted himself on the JAC - Judicial Appointments Board - which allocates heads of tribunals & inquiries It's almost like he knows he's done something wrong that needs an Inquiry?!
Following the tweet is this commentary:
Psychiatrist Simon Wessely started on the JAC in September 2017, and the JAC reappointed him again in 2020. Crucially, the Judicial Appointments Commission (JAC) decides who would head up inquiries. In other words, Wessely – a instrumental actor in the medical scandal – would get to choose who would oversee an inquiry on it.

and this:
So, to make matters worse, this hasn’t been the end of Wessely’s rise to alarming positions of prominent influence. In January 2023, the NHS appointed him to its board. As the NHS website explains, the board is:

the senior decision-making structure for NHS England. It has reserved key decisions and matters for their own decision, including strategic direction, overseeing delivery of the agreed strategy, the approach to risk, and establishing the culture and values of the organisation.

In other words, Wessely has a central role in dictating the direction of NHS services – which will of course include how the NHS treats people with ME. Additionally, the Canary previously noted that Wessely’s appointment coincided with the NHS deprioritising services for long Covid.
 
It's a pretty hard-hitting article by Hannah Sharland

A tweet in that article linked above:

Following the tweet is this commentary:
and this:

Excellent article.

The additional issue we face is that sharing articles such as this or the excellent Long Covid Advocacy 3 part series: https://longcovidadvocacy.substack.com/p/professor-catastrophe-simon-wessely

Make us sound like the militant conspiracy theorists that he has painted us as, so we are in a double bind.

Additionally he has a reputation for charming those who might help us and convincing them not to listen to us patients.

How do we fight that? How do we ever get our Post Office moment?
 
Excellent article.

The additional issue we face is that sharing articles such as this or the excellent Long Covid Advocacy 3 part series: https://longcovidadvocacy.substack.com/p/professor-catastrophe-simon-wessely

Make us sound like the militant conspiracy theorists that he has painted us as, so we are in a double bind.

Additionally he has a reputation for charming those who might help us and convincing them not to listen to us patients.

How do we fight that? How do we ever get our Post Office moment?
Only once he's retired. That's what power is all about. It will only make the fall harder, but progress in medicine happens at the pace of funerals.

Although one important thing here: the man did not promote himself to those positions, other people did, and his ideas have widespread support in the medical profession. It's because those beliefs are popular that he rose with them, not the other way around. He is definitely guilty of inflicting great ills on millions of people, but he did all of this in the open with enthusiastic support and admiration from his peers.
 
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Yeah, Wessely and his like-minded colleagues are as guilty as it gets on this stuff, and deserve very harsh condemnation.

But there is no way they could have got away with it if there was not a huge appetite for their snake oil in both the medical profession and broader community, especially the political class.

They could not have done this on their own. They are among the most protected of human species there is. Which is why it is taking so long and there is so much resistance to change.
 
.
https://me-pedia.org/wiki/Ean_Proctor



Dr. Ann McIntire's Frontline Program about ME/CFS (Vintage VHS), early 1990s? This documentary includes an interview with Ean Proctor










“Report of the Select Committee of Tynwald on the Petition for Redress of Grievance of Robin and Barbara Proctor” 19th April 1991, Isle of Man

and 'The McManus report' (McManus Commission of Inquiry into Child Care, Isle of Man) dated May 1994.

https://www.margaretwilliams.me/200...raight-about-ean-proctor-from-isle-of-man.pdf
 
Does anyone know if this in motion at all?
https://valerieeliotsmith.com/2022/03/16/a-manifesto-for-change-from-strategy-to-inquiry/

I saw this post so wasn’t sure:
https://valerieeliotsmith.com/2022/09/06/ten-years-on-somewhere-towards-the-end/

I would love to support the cause but am severe so couldn’t do a lot.
Thanks!

Hi @RainbowCloud - thank you for your question. It's slightly off-topic here but I will reply anyway (although the moderators may move or delete it).

No, my proposal as described in the post is not in motion. This is because, at the moment, the ME community in the UK is not sufficiently organised or coordinated to be able to start implementing a plan of this scale.

This project is far too big for any one individual or group of individuals to be able to take it on. For it to have a chance of success, it would require a coalition of the major ME institutions to commit to a long-term strategic plan, starting with a rationalisation and redistribution of resources. I don't see this happening in the foreseeable future.

The second blog post you mentioned explains more about this.

I hope that helps. Thank you for your interest.
 
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Hi @RainbowCloud - thank you for your question. It's slightly off-topic here but I will reply anyway (although the moderators may move or delete it).

No, my proposal as described in the post is not in motion. This is because, at the moment, the ME community in the UK is not sufficiently organised or coordinated to be able to start implementing a plan of this scale.

This project is far too big for any one individual or group of individuals to be able to take it on. For it to have a chance of success, it would require a coalition of the major ME institutions to commit to a long-term strategic plan, starting with a rationalisation and redistribution of resources. I don't see this happening in the foreseeable future.

The second blog post you mentioned explains more about this.

I hope that helps. Thank you for your interest.


Hi Valerie,


Thanks very much for your reply and for the immense amount of work you’ve done for our community! It makes me feel hopeful to see such strong, sensible and thorough planning but also sad that it feels so far from being actioned. I worry that it’ll take the rest of my life to see meaningful change, though I sincerely hope that’s not the case!


I have tried to read as much as possible of what you wrote but I’m severe and can’t manage that much, so forgive me if what I ask next is something you’ve already covered. I just wanted to know if there’s anything you think we can do at the moment on an individual level (or even group level, eg. via s4me) to try and encourage the various ME charities to consider actioning your plan? I’ve also found it hugely frustrating that they’re all separated out when it seems so obvious we need strength in numbers and a louder, unified voice. I wondered about emailing them with links to your thesis and asking whether they have read it and for their view on it, but I imagine that’s been tried already. I hate feeling helpless and want to do something even if it’s small, but perhaps it’s simply not the right time to put my energy into this avenue.


I know you said you are stepping back for your health so I understand if you can’t answer, and thank you so much again either way. We, at least, hear you!


Ps. To the lovely moderators… sorry if my original message was cross-posted! I figured that Simon Wessely often represents the BPS for us and with that being part of the problems raised in Valerie’s thesis I thought it was relevant here, but I totally understand if it’s veering off too much!
 
Hi Valerie,


Thanks very much for your reply and for the immense amount of work you’ve done for our community! It makes me feel hopeful to see such strong, sensible and thorough planning but also sad that it feels so far from being actioned. I worry that it’ll take the rest of my life to see meaningful change, though I sincerely hope that’s not the case!


I have tried to read as much as possible of what you wrote but I’m severe and can’t manage that much, so forgive me if what I ask next is something you’ve already covered. I just wanted to know if there’s anything you think we can do at the moment on an individual level (or even group level, eg. via s4me) to try and encourage the various ME charities to consider actioning your plan? I’ve also found it hugely frustrating that they’re all separated out when it seems so obvious we need strength in numbers and a louder, unified voice. I wondered about emailing them with links to your thesis and asking whether they have read it and for their view on it, but I imagine that’s been tried already. I hate feeling helpless and want to do something even if it’s small, but perhaps it’s simply not the right time to put my energy into this avenue.


I know you said you are stepping back for your health so I understand if you can’t answer, and thank you so much again either way. We, at least, hear you!


Ps. To the lovely moderators… sorry if my original message was cross-posted! I figured that Simon Wessely often represents the BPS for us and with that being part of the problems raised in Valerie’s thesis I thought it was relevant here, but I totally understand if it’s veering off too much!


Thank you for your response, @RainbowCloud. It's very much appreciated.

I have had direct contact with various ME charities and other organisations over the years and they are aware of my work. However, these communications have not moved anything forward and, because part of my work involved criticising the status quo within the ME community, my contributions have not generally been welcomed.

The ME orgs have their own entrenched way of operating and, despite 50 years of repeating the same patterns with minimal progress to show for it, nevertheless they remain unreceptive to the possibility of doing things differently.

Other long-time advocates have had similar experiences with the ME orgs and, anecdotally, have reported discourteous, even abusive, responses (as has also happened to me).

As I said in my final blog post:

"A toxic culture has evolved around the illness which has poisoned public perception of the community and blocked urgently needed advances in recognition, research and the provision of health/social care.
However painful it is, we need to examine in detail ALL of the many different reasons why this has happened and what needs to be done to address the underlying causes. Inevitably, this involves the difficult task of challenging some long-held ideas, beliefs and practices."

This "difficult task of challenging some long-held ideas, beliefs and practices" needs to be undertaken within the ME community itself, as well as by the wider groups (such as the media and the psych lobby) that have traditionally caused so much suffering to the ME patient community.

Unsurprisingly, however, this is not a popular concept inside the ME community so, with that in mind, I do not think my work will gain any further traction.
 
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Thank you for your response, @RainbowCloud. It's very much appreciated.

I have had direct contact with various ME charities and other organisations over the years and they are aware of my work. However, these communications have not moved anything forward and, because part of my work involved criticising the status quo within the ME community, my contributions have not generally been welcomed.

The ME orgs have their own entrenched way of operating and, despite 50 years of repeating the same patterns with minimal progress to show for it, nevertheless they remain unreceptive to the possibility of doing things differently.

Other long-time advocates have had similar experiences with the ME orgs and, anecdotally, have reported discourteous, even abusive, responses (as has also happened to me).

As I said in my final blog post:

"A toxic culture has evolved around the illness which has poisoned public perception of the community and blocked urgently needed advances in recognition, research and the provision of health/social care.
However painful it is, we need to examine in detail ALL of the many different reasons why this has happened and what needs to be done to address the underlying causes. Inevitably, this involves the difficult task of challenging some long-held ideas, beliefs and practices."

This "difficult task of challenging some long-held ideas, beliefs and practices" needs to be undertaken within the ME community itself, as well as by the wider groups (such as the media and the psych lobby) that have traditionally caused so much suffering to the ME patient community.

Unsurprisingly, however, this is not a popular concept inside the ME community so, with that in mind, I do not think my work will gain any further traction.


Hi Valerie, sorry for taking a while to reply – had a crash unfortunately but hopefully working my way back to baseline now.


That’s really sad and frustrating to hear that despite trying to get the ME charities to hear you, you weren’t listened to. I’m very glad that the charities exist, but the scale of the issues that people with ME and related illnesses face is so enormous that we desperately need them to be taking every opportunity to progress, and and I really don’t feel like there’s adequate support relative to that.


I’m sure funding plays a part but it’s clearly not just that. Recently we’ve seen Carers UK organising a petition to hand to the new Labour government, the Lib Dems putting care at the centre of their campaign (and Emily Davey having MS), a public enquiry about the government failings during the Covid pandemic, a recent article about Maeve Boothby O’Neill and Sajid Javid, and I think; ‘come on ME charities, where are you? This is such an opening for you to capitalise on!’ Then… nothing (or nothing publicised anyway).

I know I’m preaching to the converted but at least you know others validate your views and feel so much more needs to be done too. I wish I had the know-how or energy to change things and thank you again for trying!
 
The latest idiocy from Sir Simon.

LBC news
Mental health isn’t the problem—the system is: Natasha Devon on Sir Simon Wesley’s controversial comments

Sir Simon Wesley, who is a non-executive NHS England director and former president of the Royal College of Psychiatrists, caused some controversy yesterday when he claimed continued awareness-raising around mental health should cease because services are struggling to cope with demand.

He went on to cite the fact that young people are far more likely than older generations to report poor mental health and to say “they were talking about loneliness, homesickness, exam stress, academic pressure, concerns about climate change, which we probably wouldn’t really classify as mental disorders”.

...

The article goes on to point out that many services for young people including adolescent mental health services, youth clubs, sports centres, libraries,
etc have been cut drastically over the last 14 years, and concludes:

Older teens face a choice between a terrifyingly competitive employment market or taking on record amounts of debt to go to university. Racism and misogyny are rife, the planet is dying and we may very well be on the brink of WW3.

In other words, many children are growing up in an environment where not only is everything scarier and more pressured, but the things which would allow them to cope have been taken from them.

In that context, it doesn’t matter if the reasons they give for their overwhelming anxiety or depression seem mundane.

If they are struggling to function, they require support.

And however convenient it might be for an overburdened NHS to attempt to do so, I’m afraid there is no getting away from that fact.

So that's all right then. Sir Simon to the rescue, tell adolescent's they're not in need of support after all. NHS problem solved.

Bah humbug.
 
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