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March 22, 2011 / globalglue

CFS / ME / PVFS / CFIDS – A Guide to the Controversy

Ok. So, first up a caveat – I’m not employed in the medical profession. The following are my opinions, they are not established fact! This post is exclusively aimed at providing a concise, accurate summary of the current consensus on Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) and to clear up some of the misconceptions surrounding the illness.

This is not intended as a guide for symptoms / treatment / diagnosis etc. There are a plethora of websites which cover this information – see links in Section 3.

The topics covered here are:

Section 1. CFS / ME / PVFS / CFIDS – Do they mean the same thing?
Section 2. XMRV – Unsung Panacea or Global Conspiracy?
Section 3. Burning Down the Rumour Mill – Dispelling the misconceptions about CFS.

So, without further ado, we start with the first point of contention:

1. CFS / ME / PVFS / CFIDS – Do they mean the same thing?

As of the date of this post, the answer is unequivocally YES: ‘Chronic Fatigue Syndrome’, ‘Myalgic Encephalomyelitis’, ‘Post Viral Fatigue Syndrome’, ‘Chronic Fatigue and Immune Dysfunction Syndrome’ are all the exact same condition.

Now, before some of you jump down my throat, let me explain:

Firstly, to date there is no clinically proven, internationally recognised diagnostic test that can prove or disprove that an individual has any one of the above named conditions. There are no physical biomarkers that will identify the presence of CFS in a patient, let alone distinguish CFS from ME (although this could be on the cards in the near future – see Section 2).

Secondly, the definitions for each condition vary from institution to institution, from country to country. What qualifies a patient to be diagnosed with CFS for one establishment may not be sufficient to meet the criteria for another. In addition, a patient labelled with CFS by one practitioner could equally as well have been labelled with ME by another – there is a large overlap of the differing definitions.

Currently a diagnosis is given on the basis of a combination of anecdotal description and exclusion of any other detectable disorders/diseases.

Taking the above factors into account it becomes clear that the best we can hope for is a generic bucket term equivalent to ‘Unknown Chronic Illness’ that covers all patients suffering from similar symptoms and which have no identifiable origin. It doesn’t matter much what the bucket term is called as we don’t know whether all the people are suffering from the same thing – it could be that it covers several illnesses that display the same or very similar symptoms.

To this end, the majority of the medical community reached a consensus and termed this unknown bucket term ‘Chronic Fatigue Syndrome’ (CFS). The US Centres for Disease Control and Prevention (CDC) refers exclusively to it as CFS. The UK’s National Institute for Health and Clinical Excellence (NICE) opts for the slightly more diplomatic CFS/ME.

Now what this doesn’t mean is that those in medical community are happy to just hand you a nondescript label and write you off, to be forgotten for all time. Nothing could be further from the truth! It’s enormously frustrating for a doctor to be unable to clearly identify a cause for a problem and to be unable to provide a quick cure for the patient. It’s merely the most convenient way to try to get everyone singing off the same hymn sheet and pulling in the same direction.

And the situation isn’t static! Researchers are finding out more and more every day, but it’s crucial to recognise that it takes time.

In the next section we look at some of the current lines of research.

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