Chronic fatigue syndrome what you really need to know

The Good Life Letter

Friday 26th August 2011

  • Chronic Fatigue Syndrome scientists getting death threats
  • Should we be ashamed about mental illness?
  • Good news for leukaemia sufferers

How can it be that the work of a researcher investigating Chronic Fatigue Syndrome actually puts him or her in danger?

I'm not talking about a scientist who is messing about with radiation or nasty chemicals, they might deserve to be at risk - the folk I refer to are people looking at human health.

It was a real shock to me to find that several eminent professors are receiving death threats because of their work in the field of chronic fatigue syndrome and myalgic encephalopathy (CFS & ME).

These two related, but distinct conditions are responsible for the suffering of about 250,000 individuals in the UK, and maybe as many as 17 million worldwide.

Symptoms vary in severity but typically include constant pain, chronic muscle fatigue and central nervous system dysfunction.

Surely just the type of conditions for which medical science should be looking to establish a cause and a rationale for treatment; and indeed many university medical schools are actively conducting research right now.

The problem comes whenever any of them start to discuss the issues surrounding cognitive function and psychological stress.

You see there is a lunatic fringe out there who strongly object to any link being made with mental illness - preferring instead to only consider that it is a physical disease, linked to a post viral infection.

In an article in The Observer the reporter Robert McKie claims that the police now consider these militant activists are 'as dangerous and as uncompromising as animal rights protestors'.

He cites instances where scientists have been attacked, threatened with knives and received e-mail and letter threats as grounds for such a strong statement.

I find it totally unbelievable that anyone could want to intimidate anyone else in this way, whatever the provocation.

I have several acquaintances who have been diagnosed with CFS and I am well aware of how hideous their lives are as a result of the constant pain. I would give anything to allow them relief from their daily torment.

I also know about a series of false dawns for progress in identifying the cause for their condition, the last one being a virus called XMRV.

A few years ago this virus was linked to CFS by an American immunologist called Judy Mikovits, who has since had her work challenged because no-one else has been able to reproduce her findings, and it has been assumed that her results were affected by contaminated samples.

The fact remains that many sufferers of CFS actually test positive for the virus and are demanding anti-viral drugs to combat it, and as I said, in their shoes who wouldn't?

I also understand the basis of their fear that if the medical community is allowed to class the CFS/ME as a psychological disorder rather than a disease then it will no longer attract funding for research, and a potential cure.

Good quality research has to consider all possibilities, and it is necessary for trials to occur without bias and interference. That is how so many major discoveries have been made.

There will be errors made, and blind alleys travelled.

If the end point is that a combination of physical, neurological, chemical and psychological factors are present, it is best that their influence is known and can be managed.

I think what we have to consider is how, as a society, we view mental illness rather than worry about how CFS/ME may manifest in this way.

Is mental illness society's problem?

Isn't this the real issue here? Are we really happier to know that an external agent is responsible for a failure in health rather than consider a problem within our own psyche?

Consider how all of those who are sufferers of a mental illness must think about the response of the CFS militants.

In this respect it does directly affect me as my father's dementia is not a product of a viral attack, but is a challenge for him and the rest of our family. I will continue to seek out information about this debilitating condition and ways that we can manage and influence its progress; I'm grateful for any research findings.

Last Friday the Daily Express reported that a Swedish team have found vitamin C to be effective in combating the effects of Alzheimer's disease, helping to reverse the build-up of toxic protein plaques in the brain.

I don't believe that this alone will help Dad, but I am sure as heck going to make sure he gets a glass of fresh juice a day from now on.

Unlikely cures for cancer

In this same week came heartening news for another major group of sufferers as it appears a breakthrough has been made in the battle against blood cancers, such as leukaemia, lymphoma and myeloma.

Birmingham University announced that a form of the designer drug known as Ecstasy has been shown to have a significant impact on white blood cell cancers.

Now when I was growing up we never knew about such products, preferring to trust in the addictive power of several pints of Brains SA to enhance our dancing ability, but I understand from others that this illegal clubbers' drug has been about for a while now.

In ten years' time we may witness a version which is given out on the NHS to combat this class of cancers which kill nearly 26,000 people a year.

This type of research always makes the news for the right reasons, and I hope that as our knowledge base increases we allow our scientists to properly explore the reasons behind human conditions.

We might not always like the answers, or agree with the findings, but there is never a justification for militant action.

Yours, as always







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