Tuesday, March 1, 2011

UK Government now recognises ME and CFS as different illnesses, this however is incorrect !

MP Ian Swales, February 17, 2011:

Ian Swales MP's fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.

During Ian's recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation classifies Chronic Fatigue Syndrome and ME as the same illness.

Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that the definition he used in the debate was "incorrect".

Commenting, Ian Swales MP said:

"I am pleased that the Government has now recognised that ME and Chronic Fatigue Syndrome are two different illnesses.

"After the debate I received a lot of correspondence from the ME community about the Government's definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

"I hope that approaching ME as a distinct condition will help lead to better, more effective treatment for sufferers through better analysis of their possible different causes and symptoms."

Important dd 02.03.11: Ian Swales, MP, has misinterpreted the clarification by the Health Minister


Heather Goodwin said...

I think this is supposed to be good news, but I'm not sure it is.

If Ian Swales had convinced Government to make the distinction between Chronic Fatigue the symptom, and CFS/ME or ME/CFS the disease, I'd probably be dancing a jig right now. But I cannot be happy about this announcement.

Reason is, most GPs, Immunologists and Rheumatologists, having been nobbled by the psychiatrists over many years, still call ME 'CFS'. They do not make the distinction when diagnosing, so most people get the label CFS, whether they have ME or not.

Along with the NICE guidelines policy of no further testing, that means most patients actually get a label, not a diagnosis. Those with ME are lumped in with the rest and told they have CFS. Relatively few patients know how to recognise true ME, nor have the energy or reason to challenge the CFS diagnosis.

One of the things I've been most concerned about in watching and then joining the campaigning community is how many people there are jumping up and down (metaphorically) insisting that they have ME, whereas others 'only' have CFS. Given that the medical community isn't making the distinction in diagnosing, this is condition snobbery and does us no good at all.

The truth is, until diagnosticians within the UK NHS know how to make the distinction between CFS and ME,and likewise most patients (because most patients are NOT part of this campaigning community), there is massive confusion and nobody can say 'I have this but you only have that'.

I think Government has just made things worse with this distinction, not better.

Suzy Chapman said...

Ian Swales, MP, has evidently misinterpreted the clarification by the Health Minister.



This misinterpretation of Mr Burstow's clarification about the WHO classifications is going to cause a good deal of confusion.

I think Mr Swales needs to scrutinise the response he has received.

The Minister's clarification related to WHO terminology - not to UK government policy.

The issue is this:

During the Westminster Hall debate (4 February 2011) Mr Burstow had said that the World Health Organisation (WHO) uses the composite term "CFS/ME" for this condition. This is incorrect.

WHO does not use the term "CFS/ME" or "ME/CFS".

Mr Burstow later corrected himself in his Written Response of 16 February.

In his response, Mr Burstow clarified that [in the International version of ICD-10] the WHO classifies Myalgic encephalomyelitis and Postviral fatigue syndrome under the same classification - G93.3.

G93.3 sits under the parent category "G93: Other disorders of brain" which is classified in Chapter 6: Diseases of the nervous system.

Chronic fatigue syndrome is indexed in ICD-10: Volume 3: The Alphabetical Index to the G93.3 coding.

So in ICD-10, the WHO classifies all three terms to the same code.

It needs to be understood that Burstow was correcting himself over his mistake in WHO ICD codes - he was not stating UK government position on the relationship between CFS and ME.

He says in his Written Response that:

"The report of the CFS/ME Working Group to the Chief Medical Officer, in January in 2002, suggested that the composite term CFS/ME be used as an umbrella term for this condition, or spectrum of disease. This term is also used by the National Institute for Health and Clinical Excellence for their clinical guidelines."

He does not say that UK government is accepting CFS and ME as two separate diseases/conditions.

Incidently, the forthcoming revision of ICD-10, which will be known as ICD-11, also has all three terms classified within Chapter 6: Diseases of the nervous system, with ME as an Inclusion term to Chronic fatigue syndrome.

Suzy Chapman said...

Yesterday, on the ME Association's official Facebook site, Dr Charles Shepherd, Honorary Medical Adviser to the MEA and Member of the MEA Board of Trustees, clarified:

"The government is not having a sudden change of mind and classifying ME and CFS as two separate illnesses.

Lord Howe, in a written answer to the Countess of Mar, has again made it clear that they will continue to use the composite term CFS/ME - as used in the 2002 CMO report.

The govt continues to regard CFS/ME as neurological in nature."

It was clear from the Minister's Written Response that he was referring to WHO classifications and not to UK government policy.

I do hope that Mr Swales is going to be publishing a retraction of the report here:


Anonymous said...

UK government recognises M.E. by what definition? Ian Swales did not name the definition that proclaims to show M.E. to be different from CFS defined by the Oxford depression/fatigue criteria so we are left to wonder what if anything has changed. Or is this all talk and no action to make us feel like they are listening but continuing down the same old path? We need answers!

Dr Speedy said...

Thx for clarifying that.

Suzy Chapman said...

Today, Dr Charles Shepherd, Honorary Medical Adviser to the ME Association, has posted the following on the MEA's Facebook Wall:

"I briefly met Ian Swales MP in the House of Commons committee room corridor yeaterday afternoon while I was on my way to a meeting.

"I have just written to Ian as well to clarify the position and point out the statement on 'CFS/ME' from Earl Howe in his reply to the Countess of Mar.

This is up on the MEA website news section."

The statement from Earl Howe is here:


Suzy Chapman said...

Having had sight of Dr Shepherd's email to Mr Swales, I have asked Mr Swales, via his Facebook site, whether, in light of his exchanges with Dr Shepherd, he intends to issue a statement of clarification and/or amend his report at:


since this has already, and will continue to cause considerable confusion.


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