Daily Mail (UK) - I'd rather have cancer than CFS

[worldbackwards]

"Our horrible illness is worse than your horrible illness" (out of the context of say functional scientific comparisons) is not good PR and really quite counter-productive.

...and so the first lesson of throwing our lot in with the grubby likes of the Mail is learnt

 

[Min]

We need to keep the Mail on our side as they are about the only UK newspaper not totally committed to regurgitating Wesselyite propaganda. They have printed a number very good articles on M.E., it is unfortunate that they also promote Lightning Process etc. from time to time, and also recently printed the appalling PACE trial spin.




http://www.dailymail.co.uk/health/a...ims-starving-children--Ive-seen-ill-Lynn.html

 

[worldbackwards]

They have printed a number very good articles on M.E., it is unfortunate that they also promote Lightning Process etc. from time to time, and also recently printed the appalling PACE trial spin.

Well, exactly. They'll turn on us in a second, which rather invalidates anything nice they ever say about us. I doubt even people who read the Mail really believe what's in it.

 

[Min]

This has been added as a comment under the article. Can anyone confirm it please?

Did Sophia Mirza's autopsy lead to a complete revision of medical thinking about ME, and the immediate cessation of pressure on ME/CFS patients to engage in CBT and Graded Exercise Therapy? No. Somone in the lunchtime session at the Stanford Conference this spring (on how journalism treats ME/CFS) said the doctor performing that autopsy lost his job and was forced to seek work abroad.

 

[Wildcat]

.
@Min - That sounds rather confused. It was Dr Chaudhaury and another neurologist (whose name I can't remember) who did Sophia Mirza's final autopsy. It sounds like there has been some confusion with Dr Jonathan Kerr, who did not do the autopsy but who did lose his tenure at St Georges hospital where he had been doing gene expression studies on ME.
.

 

[Min]

.
@Min - That sounds rather confused. It was Dr Chaudhaury and another neurologist (whose name I can't remember) who did Sophia Mirza's final autopsy. It sounds like there has been some confusion with Dr Jonathan Kerr, who did not do the autopsy but who did lose his tenure at St Georges hospital where he had been doing gene expression studies on ME.
.

Thank you

 

[Sasha]

I genuinely misread the title of this thread just now as, 'I'd rather have cancer than the Daily Mail'.

Quick double-take there...

I agree that they've often been supportive but they sometimes have the usual confusions, depending on which journalist is writing the piece. Sonia Poulton at the Mail is a strong and well-informed supporter of ours

In my family we call it the 'Daily Wail'. A lot of their front-page headlines seem designed to frighten pensioners into buying it.

 

[charles shepherd]

This has been added as a comment under the article. Can anyone confirm it please?

Reply:

As a member of the UK 'post mortem group' that has been involved with almost all of the people with ME/CFS who have sadly died from various causes over the past few years and agreed to have items of tissue removed after death for research purposes, can I state quite clearly that nobody has lost their job, or been threatened in any way, as a result of the work that we have been doing, and continue to do.

Abstract from our report in the Journal of Neurological Sciences:

Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases

DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
1Addenbrooke’s Hospital Cambridge UK
2Queen’s Hospital Romford Essex UK
3Royal Devon & Exeter Hospitals UK
4Honorary Medical Advisor to ME Association UK

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.

We report the post mortem pathology of four cases of CFS diagnosed by specialists.

The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.

Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.

The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.

One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.

This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.

Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.

The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.

Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.

A specific CFS / ME brain and tissue bank in the UK is proposed.

 

[Aurator]

There are now 112 comments on the article.

These two caught my attention:

"Cancer is a horrific and cruel disease. So much pain and a slow death. I just do not agree with this woman. These people with supposed CFS (remember when it was called 'yuppie flu'?) should have structure to their day - get up at a set time, go for a walk, rest, eat, walk , or it's a slippery slope. An under active thyroid causes tiredness/exhaustion. She should get hers checked."

"Bravo to the Daily Mail for representing the other side of ME/CFS, i.e. the real one, rather than that scientifically unsupported, economically and politically expedient one that has held sway for so long: that people with ME/CFS are just not trying hard enough to get better and have false illness beliefs. Any journalist willing to look in a little more detail at successive governments' constructive neglect of ME/CFS and its sufferers, and at the self-interested efforts by some of the most influential psychiatrists in our country to place the treatment of ME/CFS firmly inside the orbit of psychiatry, would find compelling evidence of wilfull mismanagement, "sleaze", and downright inhumanity of epic proportions."

 

[Mij]

Reply

Yes, while FM and ME/CFS have symptoms in common there are also important differences - so they are not the same condition.

I'm afraid we were not given the opportunity to check the whole article and correct any errors before it went to press.

Yes, they are not interchangeable. Not all ppl with ME have pain.

 

[lansbergen]

"Cancer is a horrific and cruel disease. So much pain and a slow death

It is and endstage cancer pain is as severe as ME pain.