• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

MEA requests meeting with Science Media Centre on PACE trial

Messages
1,446
.
The UK Charity Commission does not have teeth, and has demonstrated over the years that its not interested in investigating a charity which facilitated the psychologising of ME, even where said charity has blatantly breached UK Charity Law. AFME breached Charity Law for years by denying its members the right to vote for Trustees. There were numerous complaints to the Charity Commission about that but the CC refused to act. Only due to intensive campaigning by ME sufferers on AFME Facebook in 2009/10 did AFME eventually relent, and gave its members the vote that is required by Charity Law. But AFME still is in defiance of Charity Law by refusing its members the right to stand to become Trustees without prior vetting/selection by AFME.

Asking the UK Charity Commision to investigate and address the activities of the Science Media Centre will be no more effective than sending a gerbil to tame a grizzly bear. So don't get your hopes up.

Having said that, complaints to the Charity Commision would go on record as official complaints.
.
 
Last edited:
Messages
1,446
.
There have been numerous complaints from individuals and the MEA, Invest in ME and AFME made to the Press Complaints Commission over the years. To my knowledge the PCC have not upheld any of the complaints.


For example:

http://www.investinme.org/Article-505 PCC Complaint Aug 2011.htm

Complaint by Invest in ME to the Press Complaints Commission (2011):

During July and August 2011 a series of articles has appeared in the UK press carrying the same, or very similar stories all highlighting the opinions of Professor Simon Wessely of King’s College, London – specifically his views on Myalgic Encephalomyelitis (ME) (sometimes referred to as Chronic Fatigue Syndrome (CFS)). The articles and newspapers concerned were –


The Sunday Times "Shoot the medical messenger – see if that’ll cure you" - Rod Liddle 31 July

The Times 6 August 2011 - Stefanie Marsh. Chronic fatigue syndrome researchers face death threats from militants -Robin McKie - 21 August 2011

Observer "Mind The Gap" – Wessely -26 August

Daily Telegraph "Protestors have got it all wrong on ME" 27 August 2011 Max Pemberton


(IIME) ME is a serious, disabling and chronic organic (i.e. physical not mental) disorder. ME has been classified by the World Health Organisation (ICD 10 G 93.3) as a neurological illness affecting approximately 200,000 individuals within the UK. It is also accepted by the UK government as a neurological illness of severe disability.

We believe that the these articles mislead and distort the view of ME and people with ME. We have therefore made a complaint to the Press Complaints Commission as we feel that the Editors’ Code of Practice (which states that “All members of the press have a duty to maintain the highest professional standards”) has been breached.

We hope that the Press Complaints Commission will investigate what we believe are clear breaches of ethics and procedures by these newspapers.

As of 13th September 2011 the PCC promised to supply a decision within 35 working days.

The response and decision of the PCC was received on 18th October 2011.

The correspondence:

Code of Practice which all newspapers and magazines who subscribe must adhere to
click here


1 IiME Letter to PCC
29th August 2011

2 Reply from PCC
5th September 2011

3 Further IiME Letter and Document to PCC
10th September 2011

4 Reply from PCC
13th September 2011

5 Decision by PCC
18th October 2011

http://www.investinme.org/Article-505 PCC Complaint Aug 2011 I01.htm

~~~~~~~~~~~~~~~~~~~~~~.




Invest in ME wrote 2011:
http://www.investinme.org/Article-505 PCC Complaint Aug 2011 I01.htm


Invest in ME:
There is little impartiality in these stories – indeed Sam Lister, Health editor of the Times, was seen to use Twitter to Professor Wessely’s wife congratulating himself on the ‘spread’ after his newspaper had published one of the articles about Professor Wessely -

SamListerTimes Sam Lister Times
@clarercgp
worth buying the paper tomoro (from a family perspective)...SW shd be in glorious technicolour!

clarercgp Clare Gerada
@fentonaw @SamListerTimes
Dear Sam. I gather . Hope it is friendly fire -he has had a difficult week.

SamListerTimes Sam Lister Times
@clarercgp
i cast an eye over it to make sure wasnt going down a stupid route. all looked sensible and sympathetic.Plus a nice pic!

@clarercgp Clare Gerada
@SamListerTimes
Thanks Sam. I wonder how many copies of the TImes this household will buy tomorrow.


.
 
Last edited:
Messages
1,446
.
Complaint to the PCC by the ME Association about the 2011 Telegraph article by Max Pemberton (Psychiatrist and media doctor):

http://www.meassociation.org.uk/2011/11/9393/

ME Association 2011:

Our complaint against the Daily Telegraph rejected by the Press Complaints Commission


The Press Complaints Commission (PCC) has rejected a complaint from the ME Association about an article by Dr Max Pemberton which appeared in the Daily Telegraph on August 29 at the height of the ME research ‘death threats’ saga – while upholding the right of newspapers to publish commentaries that are clearly distinguished from fact.

The PCC ruling was issued on 11 November but held back by us while we checked out whether a confusing confidentiality clause attached to it was intended to have a gagging effect.

The PCC ruled that an earlier online version of the article – in which Dr Pemberton wrote that the MEA was being “disingenuous” in claiming that there had been virtually no government-funded research into the illness – and a later version which appeared in the printed paper itself, where this reference had been removed, had both conformed to its Code of Practice.

The PCC stated: “…the columnist was fully entitled to express his views and the Commission did not consider that the reasons given for this view were significantly inaccurate or misleading such as to constitute a breach of Clause 1 (Accuracy). Although it did not establish the claim represented a breach of the Code, the Commission welcomed the newspaper’s decision to remove it from the version published in the newspaper and ultimately published on the website.”

While the cause and treatment of ME/CFS remained highly contentious, both sides were entitled to express very different opinions and no “significant” inaccuracies were published, said the PCC.

The PCC noted that, while the Daily Telegraph had failed to publish any letters in response to the article in the printed edition, that did not in itself represent a breach of the Code of Practice. The selection of material for publication was a matter for the discretion of individual editors.

A PCC official confirmed to us on November 25 that we were free to publish the Commission’s decision. The confidentiality clause was used to try and protect the complaints process while complaints were under investigation.


~~~~~~~~~~~~~~~~~~~~~~~~~~~





The 2011 Telegraph article by Max Pemberton (Psychiatrist and media doctor), which the PCC ruled did not breach PCC rules:

On-line copy

‘Protesters have got it all wrong on ME’

‘That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

By Max Pemberton 7:30AM BST 27 Aug 2011

‘It might seem strange that a group of doctors would be subjected to harassment, bullying and death threats for attempting to help people. Even more baffling if the death threats should come from the very people they were trying to help.

Yet earlier this month, Prof Simon Wessely, a doctor and pioneering researcher into ME (myalgic encephalomyelitis), disclosed that he and other scientists working on the condition had received death threats from a small group of protesters who have ME. In addition, the protesters have made complaints to the General Medical Council, universities and ethics committees – all of which have been proved to be baseless – in an attempt to disrupt further work.

The reason for their behaviour is that research is focusing on the psychological basis of the condition; as a result of the findings, ME is now considered to have a significant psychiatric component. While the protesters represent only a tiny fraction of those with ME, it is true to say that many others feel strongly about the suggestion that it has any basis in psychology at all.

Symptoms of ME include extreme fatigue and muscle pain. Sufferers are often bed-bound or have to use wheelchairs. Many claim that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers who feel frustrated and angry that doctors remain sceptical that this is the actual cause.

The ME Association, while condemning the death threats, said that sufferers have a justifiable complaint, as almost no ongoing government-funded research is looking into the bio-medical basis of the disease. This is disingenuous.

Firstly, research is being carried out into the viral aspect, with the Medical Research Council backing a recent study into precisely this.

In addition, years of research have already been undertaken, and has produced underwhelming, inconclusive results to support a bio-medical cause. It wasn’t until psychiatrists such as Prof Wessely started treating the condition as a mental illness that real progress was made.

The current gold standard for treatment is a combination of supervised exercise and talking therapies. A major British trial published in The Lancet found that at least one in three patients with ME recovered using this approach. The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist.

Most people are more than happy to be seen by any specialist. If you have a painful knee, for example, you might be seen by a rheumatologist and an orthopaedic surgeon. If the condition was seen as involving one more than the other, that would never be considered evidence that no one was taking you seriously, or that your welfare was undermined.

Microbiologists and immunologists have been unable to help ME patients, and so psychiatrists have become involved. But that is considered outrageous. People refuse to go to outpatient appointments and refuse treatment, despite evidence that it works. Accusations are thrown around that the medical profession is not taking them seriously. But just because doctors frame a condition in terms the sufferer does not like does not mean doctors are not taking it seriously. That people feel threatened by the idea that ME has a psychological component says a lot about the stigma of mental illness.

It’s an attitude that dogs the lives of many people living with mental health problems. Yet, for me, a psychological explanation is a very real one. It doesn’t mean someone is faking it; it doesn’t mean the illness does not exist. It also does not mean that people should be able simply to pull their socks up and get better, or that is under conscious control. However, it is testament to the complexity of the brain that the mind is capable of such stark physical symptoms. As a model for understanding a condition, it’s as valid as any other.’
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I know nothing about the SMC and how it is constituted, and do not have the capacity to find out, but it would seem reasonable to presume that it has charitable status, having education as its charitable purpose. There has been mention of the PCC as a regulatory body but it seems likely that the Charity Commission has more teeth. In the circumstances, as one might expect an unfavourable response from the SMC, one would hope that there is an awareness of the duties of the trustees both under their constitution and general law, in case it should be necessary to consider complaint to that body.

The problem is these people are the "cream of the crop" establishment elite - they are mostly untouchable, and the Charity Commission would certainly be part of the same club. One would have to mount a huge aggressive campaign just to get the Charity Commission to "take it under advisement".

All roads lead to the disability insurers. Until they decide it is in their interest to change the polices regarding our illness, the polices won't be changed, and our suffering will continue. Discrediting PACE and the SMC could be a path towards attacking the insurers, or a distraction away from the puppetmasters.

It has been nine years since the UK Parliament Group on Scientific Research into ME (the Gibson Inquiry) released its report, and there has been no movement whatsoever towards a real investigation into the Wesseley School's acknowledged and long-standing conflicts of interest.

Gibson Inquiry said:
"CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies."

[The Group called for investigation of ] "numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

After nine years of waiting, I think it's safe to say there will never be a proper investigation by a public authority, so that leaves a civil lawsuit, which I think we will see eventually.
 
Last edited:
Messages
1,446
.
It was the ME Association complaint to the PCC (ie the MEA's view of the PCC decision) that stated:

"The Press Complaints Commission (PCC) has rejected a complaint from the ME Association about an article by Dr Max Pemberton which appeared in the Daily Telegraph on August 29 at the height of the ME research ‘death threats’ saga – while upholding the right of newspapers to publish commentaries that are clearly distinguished from fact."

Complaint to the PCC by the ME Association about the 2011 Telegraph article by Max Pemberton (Psychiatrist and media doctor):

http://www.meassociation.org.uk/2011/11/9393/
.
 
Last edited:

Sean

Senior Member
Messages
7,378
Wessely is a classic example of somebody who has been allowed to have too many fingers in too many pies in one field, to have way too much influence, well beyond his earned due, and what is safe. He is a senior academic/researcher with a career massively invested in a particular view/model, holds the top job in his profession (in the UK, as head of the college of psychs), is an extraordinarily influential government and insurance industry advisor, and not only a darling of the media but an active and highly effective organiser and exploiter of it.

Now we not only have the problem of him (and his like minded colleagues) having got it horribly wrong at the basic technical and ethical level, and flatly refusing to admit it. We also have the much more serious problem that the whole social power structure has (apparently quite willingly) allowed itself to become infested with this destructive nonsense, and is very reluctant to admit it and correct itself. Awful lot of power, money, ideology, careers, and individual egos now depend on maintaining this farce.

--------------------

clarercgp Clare Gerada
@fentonaw @SamListerTimes
Dear Sam. I gather . Hope it is friendly fire -he has had a difficult week.

Oh, boo-hoo. Simon had a difficult week. Cry me an effing river.

Any time you want to trade places for a week, Simon. Just a week. Should be enough for even you to start getting the real picture.
 

K22

Messages
92
I don't feel hopeless about this. I do think there's a staunch wall of self preserving resistance but outside that immediate inner circle of psychiatrists etc & outside, those who've built careers on us, will be others, perhaps newer young journalists in the uk who will be more open to at least hearing "the other side" , especially if that side includes top scientists & journalists now quite vocal in the USA.
For too long it was loony, militant "resistant" patients vs top establishment Drs and their chums in high places but things are changing.

We are compromised by patient orgs such as AFME/AYME singing as much from the other hymn sheet as the patients, pro "management" Alistair Miller & Esther Crawley thoroughly embedded into their approach as they claim to act for patients but prop up and form a handy respectability buffer for the establishment to proceed with the naf guidelines, name, loose criteria, cbt/get fatigue clinic solutions it prefers. But I still think the encouraging surge I see in the USA will reach these shores & are giving us a credibility we haven't had before, I just hope it's soon.

I also, since the IOM report don't think the SMC could get away with the vicious media onslaught they engineered a few years back now, certainly not so constantly inferring we have mental illness but didn't want to accept "help" from saintly Wessely.
 
Messages
1,446
.
Individual journalists do not have the power to get whatever they want printed. Its editors who decide on what is printed. A glance at the media people on the list of SMC Trustees and Advisory board gives an idea of how embedded the SMC is now in the UK extablishment.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I'm unsure quite how Dr Shepherd (aligned to the MRC) can effectively complain to the SMC about PACE who deny ME is an organic disease, when:

*The MRC funded PACE
*The mindset of PACE remains embedded in the new MRC CFS Research collaborative (Crawley et al).


As much as we appreciate Dr Shepherd's help, one solitary supporting voice of the ME patient community cannot prevent state denial of ME, via CFS/ME idea of the DOH (Department of Health).
 
Last edited: