The War of the Words

Since my testimony to the Leveson Inquiry back in February 2012 , pleas for the barbaric portrayal of M.E patients to stop in the media have largely gone unheard. My testimony can be found on my website which is undergoing maintenance at the moment.

Lord Justice Leveson appears not to be bothered by the smearing and denigration of a patient population, 25% of which are severely affected, a percentage of that group are bedbound and on feeding tubes and have hickman lines in place.

The battle lines have now been drawn and an ugly fight has emerged. On one side, charities, patient advocates, some respected media and House of Lords peers and the other, psychiatrists who insist they have been venomously attacked by supposedly sick patients.

Times have changed. People are no longer the focus of Government policy. Human lives are not at the heart of Cameron’s “Big Society”, nor are they at the heart of the fruitless NHS Bill. Nothing this Government is doing has the benefit of the British people at the sole of its policy. When did Britain stop caring? Was it back in 1994 when UNUM signed a contract on welfare reform using a psychosocial model of illness to get people back into work – sick or otherwise? When did our NHS start failing its patients and decide that if it cannot help them – it would deny their very existence? This is where Wessely and his colleagues who support his psychosocial model of M.E come to fruition.

The so called media war against M.E patients began a week after Professor Ian Lipkin announced his XMRV findings at a Conference in New York.  Lipkins’ HGRV’s being the cause of M.E but we were sadly proved wrong, Judy Mikovits’ work was a mistake and it was time to move forward. One thing, however, emerged out of the ashes of XMRV, and that was that they HAD found abnormalities in B Cells and they intended to undertake further research on it. The pledged to find the cause of M.E and Lipkin boldly announced for patients to stand up for themselves and demand research and action from their Governments. Little did he know where that statement would take us.

It appears that the whole media stitch up was orchestrated, planned and calculated by Professor Wessely using his position at the Science and Media Centre to influence the spate of negative press. The fact that one article came out on the day of Emily Collingridge’s funeral was particularly telling.

The first signs of battle were when articles appeared in the Mail on 18th September (http://hanlonblog.dailymail.co.uk/2012/09/me-is-probably-a-mental-illness-after-all-but-that-does-not-mean-that-it-is-not-real.html), followed by Max Pemberton on 24th September

http://www.telegraph.co.uk/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html

and Damien Thompson in the Telegraph (http://blogs.telegraph.co.uk/news/damianthompson/100183212/its-safer-to-insult-the-prophet-mohammed-than-to-contradict-the-armed-wing-of-the-me-brigade) on 28th September.

How this systematic abuse of patients in the media can go allowed and unchecked remains a mystery to me and is something I shall pursue with the new Watchdog set up in the wake of the Leveson report, after all the Press Complaints Commission don’t want to know, they have made it clear that they are on the side of the SMC.

After these articles came out late September, a war emerged on Twitter. Various advocates, decent hardworking sick people like myself, tweeted the respective authors of the articles challenging them to look at biomedical facts about M.E.

Imagine how hard it is to run a charity which is trying to change perceptions of M.E when we are being portrayed as whingers and raving lunatics who won’t accept their mental illness. Our portrayal in the media is a far cry from the pictures of Lynne Gilderdale in her bed with a tube coming out of her nose. Given the fact that we live in times where terrorism is a commonplace occurrence, from 9/11 to the London bombings; it is an insult to be compared to terrorists. The comparison made me feel physically sick.

As one member on a forum said “I hope people do question the truth of these claims and let’s see the extent of the evidence. We all have access to a crime prevention officer and are all able to gain a high alert rapid response just by dialling 999. You would think reading this rubbish that there was an ME equivalent of a Taliban training camp. It is a pathetic article.”

Even Esther Crawley has jumped on the bandwagon stating she has been threatened and abused. A large list of WesselySchool supporters have come out and signed in support of the so called abuse.

http://www.independent.co.uk/voices/letters/ios-letters-emails–online-postings-2-december-2012-8373777.html

Myra McClure also reported the same when she published her negative XMRV paper.

So just exactly who are these so called abusers? I’ve never seen a malicious tweet to Max Pemberton as he claimed or any other journalist or health professional. I’ve never seen malicious emails or anything that could be considered hate crime. Just who are these people? Come out; come out, wherever you are.

Whatever the case may be, it just won’t stop, the never-ending denigration of M.E patients in the media. One journalist who published a positive article in our favour was warned off and received a letter from Wessely himself.

What do we actually want? Just a bit of fairness in medical practice  We want our disease to be treated and researched under proper criteria, not criteria that can include people with idiopathic fatigue and depression, at present anyone complaining of bit of fatigue lasting more than four months is being diagnosed with M.E – other neurological signs and symptoms are largely ignored.

And now for the psychiatry perspective: psychiatrists studying the viral neuro-immune disease known as M.E/CFS have been stating for years that the most rigorous Canadian Criteria (2003) for ME/CFS (Summary here: http://www.cfids-cab.org/MESA/me_overview.pdf ) are just too difficult to apply in research.

This is why when a team of psychiatrists (ask yourselves why are psychiatrists involved in drafting any policy on a neuroimmune disease?) were drafting the UK NICE Guidelines (see attachment CMO’s Working Group on M.E) they purposely left out the Cnadian Criteria with regards to diagnosis and management of patients. Hence Wessely gets his way by the use of the Oxford and Fukuka Criteria’s, thus strategically prolonging their beliefs for exercise and behaviour modification based treatment clinics, by lumping in together overweight/unfit patients, depressed patients, patients with unexplained fatigue and patients with anemia.

This team of prominent psychiatrists, known as the Chief Medical Officer’s Working Group, who have for far too long held sway over M.E treatment, dictate that patients with a diagnosis of ME/CFS are consistently refused and denied biological diagnostics, such as heart testing or immunological workups. This generates a self-fulfilling prophesy, a delusion on the part of psychiatrists that ME/CFS has no physical findings..”we were right all along”.

Moreover, the severely affected were excluded from the MRC current PACE “CFS/ME” trial (the management of which is directed by Wessely, who is also responsible for randomisation and database design):  “Exclusion criteria: subjects unable either to attend hospital reliably or to do therapies”  (ref: Trial Identifier: 3.6).  The Trial Identifier is clear (at 3.4) that: “CBT (cognitive behavioural therapy) will be based on the illness model of fear avoidance” and that “GET (graded exercise therapy) will be based on the illness model of both de-conditioning and exercise avoidance”, neither of which occurs in authentic ME: studies that specifically set out to demonstrate de-conditioning (for example, Bazelmans et al: Psychological Medicine 2001:31:107-114) and exercise phobia  (for example, Gallagher AM et al: Journal of Psychosomatic Research 2005:58:4:367-373) failed to do so.

What do these psychiatrists get in reward for their so called efforts in the face of adversity? A stinking great award in the shape of the Maddox Prize, hosted by SMC supporters ‘Sense about Science’. You couldn’t make it up if you tried. His organisation, the Science and Media Centre also came out for their 10th Anniversary in support of Wessely, with an article about being abused by M.E patients.

This is the man who said “Inappropriate referrals to physicians can lead to extensive physical investigations that may then perpetuate the symptom pattern of physical attribution”. It is this reason and this reason alone why I was ignored and told my pains were psychosomatic when in fact I have a serious liver condition and have been met with total disregard from the medical profession, refused antibiotics when my white cell count was over 20 and I was nearly in sepsis, all because the doctor thought, and I quote “you have M.E you were always going to be a difficult patient”.

“The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: the average doctor will see that they are neurotic and he will often be disgusted with them”.

I think you’ll find that this is what is known as the abuse of patients, not the other way round Professor Wessely.

All was not lost. Just when we thought we couldn’t sink any lower, our knight on a steed comes marching in, Professor Malcolm Hooper, denouncing Wessely’s award and demanding it is retracted. “He’s responsible for trying to make ME into a psychiatric condition when it’s not. He has done very poor science.”

Another opponent, the Countess of Mar, said: “I was absolutely horrified when I read he’d won the award and I would like to see it retracted.”

http://www.independent.co.uk/news/science/me-bitterest-row-yet-in-a-long-saga-8348389.html

Lady Mar hadn’t finished with Wessely yet. She sent him a scathing letter on 5th December http://www.meassociation.org.uk/?p=13875, criticizing his approach to M.E patients and his behaviour in general.

So where does this leave M.E patients? The outlook looks a bit bleak, Norway’s MRC have just refused funding for the second phase of Fluge and Mella’s Rituximab study, which is most disappointing as I was hoping the UK would be following suit but sadly the only research I can see is Peter White undertaking a new GET study, hopefully not with MRC funding.

Julia Newton I believe is working hard to incorporate Tilt Table Testing into the NICE Guidelines. She has also identified a link between those who can tolerate exercise and those who can’t. Her latest talk at NewcastleUniversity on 2nd October 2012 states

“As regards the thorny question of exercise, Professor Newton explained that it causes acid to build up in the muscles. ME/CFS people accumulate more acid on exercise, and struggle to get rid of it. Studies need to be done to identify which acid or acids are involved (thought to be lactic acid); the muscles and acid-transporting system need to be looked at in detail too. Certain types of exercise are very good at clearing acid and other types make it worse, because they increase the heart rate and push people beyond their anaerobic (lactic acid) thresholds, which they mustn’t go above – up to 80% is enough. The Newcastle team offer “Individualised Activity Management” (avoiding the dreaded e-word!) believing that, as with prescribing a medical drug, the choice, dose and duration of activity needs to be carefully worked out and agreed on to suit each patient.”

They have suggested autonomic and cardiovascular assessments for ME patients in the UK NHS clinics. This is a massive step forward to the NICE review which Neuroimmune Alliance has been working rigidly on.

Of course Wessely had to have his say about this, I can’t be bothered to go into his points but you can view them here…http://occmed.oxfordjournals.org/content/60/8/665.short

So what do I make of it all?

My opinion from conversations with Professor Wessely is that he isn’t evil; he isn’t out to try and murder patients. My feeling is that he has sociopathic qualities. He has to have absolute control. There cannot be room for any other viewpoint; it has to be his and his alone. He has ensured this  has happened by controlling what the media say though his role at the Science and Media Centre and through the establishing of his colleagues within various important roles within Government and research. All biomedical science is squeezed out; the field is surrounded by psychiatrists. Surrender to your enemy or fight for freedom. Both sides of the M.E story are not allowed to surface in the UK and this is why there is anger within the community, though I do not condone threatening behaviour of any kind.

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1 Comment (+add yours?)

  1. Dream
    Dec 12, 2012 @ 13:57:16

    A few points regarding the retrovirus research. The Lipkin cohort was not found to have any B cell abnormalities, that is a different study which was mentioned. XMRV is not a HGRV and Dr Mikovit’s serology and gag sequence data has been detected with methods that do not react to contamination. That data is sound.

    Reply

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