Posted in Explaining ME

Is it a Stephen King Novel?

The plot starts decades ago, when an illness surfaced in the 1930s; labelled Myalgic Encephalomyelitis.

Since then, other terms have been used, Chronic Fatigue Syndrome, Post Viral Fatigue and Chronic Fatigue Immune Dysfunction Syndrome.

While it has been dressed in different clothing, the whispers of “is it real?” continue. Patients in the 1980s were subjected to demeaning labels such as “yuppie flu”, while current patients put up with whispers of “it’s all in the head”.

In the US, Dr Nancy Klimas MD, a Professor of Medicine, Psychology, Microbiology and Immunology at the University of Miami School of Medicine recently stated in an interview, the research funding budget in the US for male pattern baldness is eighteen million dollars while the research funding budget for ME is three million. Why is this? When it is estimated one million people in the US have ME and 25% of them are out of work. In the UK it is believed 250,000 patients suffer from ME while here in Ireland the figure is reported to be 10,000 patients.

Why is there so little funding for an illness that affects so many people, 25% severely?

The World Health Organisation classifies ME as a neurological condition yet in the US at present, the Department of Health and Human Services is determined to spend money on reclassifying the illness. The HHS intends to spend a reported one million dollars on this process, why?

What will the illness be reclassified as?

In Denmark in 2010 Dr. Per Fink and Dr. Andreas Schröder, published a paper in the Journal of Psychosomatic Research, where they created a new mental disorder called “bodily distress syndrome”. Several illnesses were then reclassified and ME was categorised as such. Will something similar happen in the US?

In Denmark the reclassification has reportedly led to an ME patient being forcibly removed from her home. How can this happen?

Ask the mother of Sophia Mirza in the UK.

In 1999 Sophia got a flu like illness, she never recovered and was left bed bound. In late 2000 her condition worsened, she couldn’t cope with touch, her room was blacked out, she wore eye pads and ear plugs. She was unable to speak and was reduced to lying still in her bed.

In 2001 a doctor mentioned an M.E specific clinic and upon researching the neurological centre, Sophia’s mother learned through ex patients it was run on the lines of a mental health hospital. Both she and Sophia decided not to attend the clinic.

By 2002 Sophia’s condition had worsened and her GP asked a psychiatrist to come on board, assuring Sophia’s mother it was the right decision. Within weeks, the psychiatrist advised, if Sophia did not comply and willingly be admitted to the M.E clinic, the doctors would section her under the mental health act.

In January, still living at home, Sophia started to show signs of improvement, she could tolerate a certain amount of light and was able to have occasional visitors. Her mum passed on this progress to her doctor but was informed he no longer had an input in her illness and had passed her case to a colleague.

Although he had no input he showed up on her door with the psychiatrist and a social worker in May 2003. They were not granted access and her mother contacted the doctor saying Sophia did not want to be sectioned but would agree to attend a different clinic. The doctor reportedly said “its too late for that now”.

Between January and June 2003 her mum contacted the NHS and the WHO, advising both, the classification of a neurological order was being ignored. She then contacted a solicitor, who assured her there was no way Sophia fulfilled the criteria for being sectioned.

However, in July 2003, the police broke down her door and Sophia was taken to a locked room, in a locked ward, in a local mental health hospital, where she reported failure of care to her mother.

Sophias solicitor requested a tribunal, it was held two weeks after her sectioning and lasted eight hours, after which, she was released. However, during those weeks in hospital her illness declined and she continued to regress when she returned home.

In 2005 her illness took a rapid decline and she passed away in November 2005.

It reads like a disgusting fictitious novel but its all very real. Should you wish to read more you can find an account here.

Recently in the UK, a reported three million pounds was spent on research called the PACE trial. As I previously pointed out, research funding is limited and one would assume limited funds are used wisely.**

To quote the authors, Peter D White, Michael C Sharpe et al, this study was “a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy”.

The outcome of this research promoted the use of GET and CBT for ME/CFS patients. However, upon close inspection, it was found the authors studied a group of people suffering from idiopathic chronic fatigue, depression,  fibromyalgia and any state of fatigue, none of which are depictive of the illness ME/CFS.

Money well spent?

Money that could have been used to study Post Exercise Malaise in ME/CFS patients?

Here is another twist in the tale. Dr Beth Unger of the Centre for Disease Control (CDC) is to carry out a one-day ME/CFS exercise study called the Cardiopulmonary-Exercise Testing. Great you say? Think again.

A previous study by Dr. Chris Snell, showed the fatigue ME/CFS patients experience is not felt immediately upon exercise; it develops 24 to 48 hours after exercise. Therefore a one day study won’t show the extent of PEM in patients. Instead a two day exercise study was called for but guess what, the CDC refused to allow it. Why?

I only wish this were a Stephen King novel. Then I could put the book back on its shelf. Instead, the most severe patients are being left bed bound, with no answers or proper treatment. Why?

** Since publishing this post, it was brought to my attention, the initial estimated cost of the PACE Trial was UK£3m. However, it received extra funding and the final cost was UK£5m.**