Thursday, 20 September 2012

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?

Sonia Poulton, Daily Mail, 19 September 2012

Ever since I first wrote on the subject of Myalgic Encephalomyelitis - or to afford it a more user-friendly title, ME - earlier this year for MailOnline, I have been overwhelmed by the response from patients and their loved ones.

The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers.

These people have Facebook-ed and Tweeted me. I have received calls and e-mails. There have been forums addressing the article and pictures and cards received which outlined a sense of relief for millions of people.

Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media.

The very notion that the media, and the press in particular, can actually serve a positive purpose in society may come as a surprise. But sometimes it does. And my piece, according to the phenomenal response that greeted it, was just one of those times.

Here's why. For decades, people who have suffered the debilitating – and sometimes fatal – condition of ME have been forced into a type of denial.

They have been told that their illness doesn't really exist on the scale that they claim to experience it (due, in part, to it being labelled a 'chronic fatigue syndrome'. A highly controversial description because it creates an image of something substantially less than what ME actually is).

They have been told, repeatedly, to 'pull themselves together' and to 'G.E.T. A G.R.I.P.' (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients).

In short, it is not enough for people to have to endure serious multi-system issues that can leave them bed-bound for months at a time, but they are also made to feel bad for, well, feeling bad.

What an injustice.

From the insight I have gained into the ME world, I cannot overstate the consequences of such a twilight-type existence. One in which your body responds a specific way but you are told that it isn't actually possible. That it's not really happening. That you are imagining it.

And that myth, of it 'being in the mind' has been perpetuated worldwide.

Millions of sufferers have been left in the dark to deal with their illness. Sometimes, if they are fortunate, they will be supported by their loved ones - who are also in need of support, too – but often they are left to deal with it alone.

For those reasons, certainly, many ME patients may suffer depression but it is not the other way around - and it is deplorable to suggest it is.

It may surprise you to learn that I have detractors or, as modern parlance would have it, haters. These people troll me on the internet as if their lives depended on it.

Around about now they will be making comments like 'get the violins out - here comes a sob story'. Well, ME is a sob story. And the way patients have been portrayed is grossly wrong and that injustice must be recognised as such.

In my experience, they are anything but cranks or victims but people who have simply waited too long to have the truth of their experience recognised.

And that, partly, arrived yesterday with the launch of the Lipkin Study, a significant multi-centre study into ME.

Chances are you may think otherwise for, as is common with any major ME announcements, there were a number of misleading reports prior to the press conference.

Subsequently, representatives from the ME society have announced their intention to pursue media outlets and seek rectification of some articles that have emerged.

In short, much of the media misunderstood the Lipkin study findings. Partly because some reports jumped-the-gun and took information from rumours and speculation rather than wait for the official announcement. But, it also occurred because the mis-information fed into already-established prejudices.

Many people, and for whatever reason, want to believe that ME is nothing more than feeling a little world-weary and tired.

It is nothing of the sort. It is a neurological condition that savages the body. People die from ME and millions across the world are being mistreated and misdiagnosed as a consequence of poor and hostile reporting.

Yesterday's announcement – that ME was not a result of the XMRV virus – seemed to herald, to some, the idea that ME is not the result of any virus but is, infact, a psychological condition.

Wrong. Wrong. Oh, and for good measure, wrong again.

Many highly-respected and learned people have compared the overall devastation of ME to illnesses including Multiple Sclerosis and even AIDS - and with good reason.

Dr. Charles Shepherd of the ME Association responded to the misleading idea that ME cannot be contracted by any virus by saying:

“There is, in fact, a great deal of robust anecdotal and research evidence to demonstrate that a number of specific infections - examples include enteroviruses, dengue fever, glandular fever, hepatitis, parvovirus, Q fever, Ross River virus - trigger ME/CFS.”

Many ME sufferers like Dr. Shepherd have little doubt that their illness was triggered by one of these viruses. The problem has been getting it recognised and appropriately treated.

This is poor response, certainly, and even more so when you factor in that the World Health Organisation acknowledged it as a neurological condition over 30 years ago, then it becomes more than a little alarming.

But there have been powerful forces at play that have served to maintain the status quo on ME thinking, and they have proven more than a challenge to be reckoned with.

For the past 60 years, the illness has been hijacked by the psychiatric community as one of 'theirs'. They have clutched ME to their collective bosom and have refused to release the iron-grasp on it.

This wholesale insistence of it being something that can be overcome with the right attitude has been highly detrimental to those who actually matter in this debate: the people who are suffering with it.

As a consequence, ME patients have been failed in terms of adequate treatment and significant funds are dove-tailed into Cognitive Behavioural Therapy and, even worse, Graded Exercise – which has been shown to have a detrimental impact on the health of ME patients.

The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the topic with some considerable aplomb.

What we are dealing with here is a systematic neglect of ME patients - and we should be under no illusion about that.

Equally, we must be sure to tackle it - medically and in the media - without hysteria or bile.

One of the reasons that ME patients are so vocal is because the mis-information of their illness has resulted in a dangerous delay of appropriate research and treatment. If that were you, would you be quiet about it? I certainly would not!

So yes, ME is a modern-day scandal. The way it has been portrayed is shocking. The Lipkin study, despite its detractors, will enable a deeper exploration of the illness and how it impacts and ravages bodies and lives.

And, to the relief of ME sufferers worldwide, that understanding cannot come a moment too soon.

Monday, 17 September 2012

ME Medical Text Book – Free Download Now Available

The book “The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome”, edited by Dr Byron Hyde and with contributions from over 80 experts, can now be downloaded for free as a pdf file – click here (NB the file size is 110 MB). First published in 1992, and with over 700 pages, this is not bed-time reading, but it has been described as an “encyclopaedia on the disease process that may be one of the biggest single causes of chronic illness in the world today”.

For further details, go to

Thursday, 13 September 2012

Creation and Providence

Another poem from "Echoes of Eternity" by Michael R Abbott; used with permission.

Creation and Providence

The world is God’s creation:
Its wonders do astound;
Its beauty bears God witness
In sight and smell and sound.

The mysteries of creation
Reveal a purpose grand;
Its splendour and its goodness
By God Himself were planned.

He visits us with blessings,
Sends water on the ground;
He gives both cold and sunshine,
That harvests might abound.

Yet men from their Creator
Have sadly turned away,
Despite the mercies that He grants
To them from day to day.

The heavens declare His greatness,
The earth reveals His love;
Yet still they do defy Him,
Who reigns in heaven above.

This earth now lies polluted
Beneath the weight of sin:
Its very fabric men destroy,
Its power and wealth to win.

Creation groans in travail,
Awaiting that Great Day,
When men will have to give account
Of all they do and say.

Thursday, 6 September 2012

Statins are killers and cause major artery damage, say researchers

05 September 2012

Statin drugs – designed to protect against heart disease by lowering cholesterol – are killers, and accelerate cardiovascular problems, a damning new report has discovered.

The drugs harden the main arteries, they are a main cause of type 2 diabetes in healthy people, and they accelerate the major health problems in diabetics, say researchers from the Phoenix Veterans Affairs’ Healthcare System. In short, the drugs help cause heart disease and death.

They monitored the health of 197 patients with type 2 diabetes and their use of statins. Coronary artery hardening, or calcification, was far more accelerated in the patients who were regular statin users compared to those who took the drugs only occasionally.

Patients who weren’t initially taking a statin quickly developed aortic artery hardening once they started taking the drug regularly.

The researchers fear their latest discoveries are but the tip of an iceberg of statin-associated adverse effects. Their database lists 300 adverse effects, including the weakening of the heart and increasing the risk of type 2 diabetes by 48 per cent in post-menopausal women.

(Source: Diabetes Care, 2012; epublished ahead of print: PMID: 22875226).

For further information on this subject, please see the following (there are many more books and website available) -

Books –

The Statin Damage Crisis by Dr Duane Graveline

The Great Cholesterol Con by Dr Malcolm Kendrick

Fat And Cholesterol Are Good For You by Dr Uffe Ravnskov

Ignore The Awkward by Dr Uffe Ravnskov

Trick And Treat: How Healthy Eating Is Making Us Ill by Dr Barry Groves

Websites -

Cholesterol And Health – The Truth About Cholesterol

Second Opinions