The issue of the correct name for this disease - which we refer to as ME (myalgic encephalomyelitis) - is one which occupies some minds.

Unfortunately there is a lot of misinformation around and some seem only to concentrate on this one issue - completely at the expense of all other progress in actually treating this disease.

ME and chronic fatigue are indeed different.

But researchers continue to use CFS, sometimes CFS/ME, sometimes ME/CFS but rarely ME.

This means practically all of the research base is using something other than the term ME.

This obviously raises issues for all researchers, physicians and the patient community.

This is accepted by the UK government.

However, UK governments and Chief Medical Officers have been negligent in allowing NICE and the Medical Research Council to continue to mix up chronic fatigue and ME and to call it CFS or CFS/ME or even myalgic encephalopathy - a construct which does not exist at all in the WHO classifications.

The acronym ME/CFS comes from the Canadian Guidelines and the fact that the WHO lists ME and PVFS under the same category (ICD10 G93.3) with CFS linking to it via the index.[1]

Invest in ME are UK distributors for the Canadian Consensus Criteria Overview document [2] and we have used ME/CFS in relation to this document. By this we mean ME - but promotion of the best clinical guidelines means we do sometimes need to refer to ME as ME/CFS.

What really matters, we feel, is the definition of ME – this has been the important point.

We have had this same discussion when EMEA (European ME Alliance) was formed. Some countries wanted to use ME only but others said that in their country ME does not exist in any of their literature. So we had to compromise to allow all countries to be made aware of ME as a name of this disease before discarding CFS altogether.

There is also the problem of researchers using CFS even if the research was on ME patients. For example, many American researchers use CFS (and some studies have myalgic encephalomyelitis as well in the title) even when, as in Dr John Chia's case, the research is  based on the traditional UK ME research and theory. Dr Chia formed his hypothesis of enteroviral connection based on the UK literature he had read and he thought that literature fitted best his perception of his son's illness.

However, to get research published researchers have had to use the CDC, Fukuda criteria as this has become the standard for research into ME.

Literature searches by researchers therefore will be affected.

Some people might be worried as most doctors and some countries only seem to use CFS but we do not see this being a problem as it is not the label that matters but the classification (ICD10-G93.3) and definition.

Disability benefits, at least in the UK, are decided by reduced function and not by the name of the disease so the label should not be a reason for patients not receiving their benefits.

Nowadays more are tending to mention that patients fitted in the Canadian Clinical criteria also and so ME/CFS is being used more.

To our knowledge the CDC have no published ME research criteria so our campaign has been to have people diagnosed according to the Canadian Criteria. Again, the definition is the important thing.

Some organisations have also used ME/CFS and researchers who present at our conference use ME/CFS.

Whilst we would support moves to move to usage of a correct name – which in the meantime we refer to as ME (Myalgic Encephalomyelitis) – we feel this will need to come from researchers, backed by patient organisations.

However, we do not believe that it is worthwhile spending all our time fighting this one single issue regarding the name if it then detracts from the important work of getting biomedical research established, funded and carried out and published.

To do so might well provide a correct name but would not make the necessary rapid progress that we need to restore the lives back to patients.

We believe that what really matters is the definition of ME – this is the important point and we have retained this view since we were formed [3].

There have been many referrals in the press and medical journals of myalgic encephalomyelitis (ME) being a lay term for CFS. This is, of course, totally incorrect as the term benign myalgic encephalomyelitis is listed by the WHO in G93.3 and CFS is in the index as a search term leading to G93.3.

At the Australian ME Symposium (4) organised by the Bond University and the Alison Hunter Memorial Foundation in December 2010 the delegates signed a communiqué where one of the key priorities was

“The name myalgic encephalomyelitis ME would be adopted to better reflect the science and seriousness of the clinical picture in preference to the misleading label of chronic fatigue syndrome CFS.”

(http://www.bond.edu.au/prod_ext/groups/public/@pub-burcs-gen/documents/genericwebdocument/bd3_016201.pdf)

Invest in ME paid for a UK researcher to attend that symposium. On our web site from the beginning we have stated the following –

We believe governments should standardise on usage of the Canadian Criteria for diagnosis, so that there is an agreed basis (noting that evolutionary improvement would be welcomed).

That evolutionary improvement has begun.

Recently a new document was published - referred to as the ICC Consensus [5].

In this abstract the authors state –

“It is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.”

The importance of the ICC document is that it clearly differentiates the biomedical model of ME from the Wessley school version of CFS disallowing any confusion to occur.

At the current time the new ICC lack physician guidance and we are awaiting publication of these operational documents.

We look forward to this document being finalised and operationalised and when we will standardise on the name ME. But nobody should be in any doubt that when using the term ME/CFS we are talking about myalgic encephalomyelitis - ME.

So, to summarise, whilst IiME has never accepted the term CFS as a serious term we have, until now, taken a pragmatic view that ME/CFS would be used – in support of the Canadian guidelines and as used by other organisations and researchers and to facilitate the researchers who still use CFS. We look forward to standardising diagnosis on one set of guidelines which will use one name and when research into ME will acknowledge these guidelines and begin to build up a research base using ME.

It can only be helpful when professionals make bold moves such as the ICC guidelines and start researching this disease using properly defined cohorts to find treatments and cures based on solid replicable and verifiable science.

People with ME want to be treated and cured to be able to return to their normal functioning and this can be only achieved by research that uses well defined cohorts of patients. The definition is the important issue.

References

 

Further Links:

1	http://www.investinme.org/Article%20010-Encephalopathy.htm
2	http://www.investinme.org/Documents/Guests/ME%20BASIC%20INFORMATION%20-%20Anglia%20ME%20Action%20-%20April%202008.pdf

 

  

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