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Cross Party Group on ME

Ember

Senior Member
Messages
2,115
Subsequent to the Scottish NHS Good Practice Statement ME-CFS (2010):
Tuesday, November 15, 2011

NHS Scotland recommends to diagnose ME with the Canadian Criteria and separate it from CFS

By Christine: The Scottish government commissioned the Scottish Public Health Network to undertake an assessment of services for those with ME and CFS. The end result is that ME be separated from CFS, with ME sufferers being diagnosed using the Canadian Consensus Criteria and those with CFS diagnosed using the NICE Guidelines. This is what ME advocates have screamed out for and is a major shift within the government-medical establishment.

http://niceguidelines.blogspot.ca/2011/11/nhs-scotland-recommends-to-diagnose-me.html
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Subsequent to the Scottish NHS Good Practice Statement ME-CFS (2010):


http://niceguidelines.blogspot.ca/2011/11/nhs-scotland-recommends-to-diagnose-me.html

Yeah. Read this: http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf

I read it before. Couldn't understand how it would work and couldn't see if it was ever taken up as a recommendation. I mean first off, the CCC is for ME/CFS and not ME, and nobody to my knowledge has ever researched or compared NICE with CCC to try and understand what difference their application would have on patient cohorts - not to mention treatment outcomes.

And I still couldn't see how any of this makes the wording of that vote in any way 'better' or 'fairer' or, indeed, a reflection of the real world and the variety of patients wandering around with variously applied LABELS.

Am away for a long weekend (lucky me). Catch y'all next week. :)

Edit: Have edited.
 

Ember

Senior Member
Messages
2,115
This was last year. So there has been an attempt to reverse this progressive move.
Health care needs assessment of services for people living with ME–CFS – short version for patients

Scottish Public Health Network (ScotPHN)

Phil Mackie
Rona Dougall
Ann Conacher
September 2011
Recommendations

1. It is recommended that the clinical, symptomatic definition of ME
outlined in the Canadian guideline be adopted in Scotland.

2. It is further recommended that a symptomatic definition of CFS, based
on that proposed in the NICE guideline, be adopted in Scotland.

3. a) There is an urgent need for a sound epidemiological study of ME
and CFS in Scotland; in which regard consideration should be given to
including ME and CFS within the Scottish Health Survey.
b) Routine reporting of ME and CFS should be considered within the
context of developing information systems for long-term conditions
monitoring under the Quality and Outcomes Framework (QOF).

4. The existing research strategy in Scotland in relation to ME and CFS
research should be reviewed by the Chief Scientist’s Office and a new
strategy developed, aimed at broadening the evidence base for
ME–CFS. To ensure effective communication of the existing, diverse
evidence base, consideration could be given to developing a centre for
research excellence and dissemination.

http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Page 11-12: What is ME-CFS?

Both the HCNA Project Group and its Steering Group agreed that the review of the
evidence did not suggest that a single definition of ME–CFS was useful.

Similarly the two workshops did not agree on a definition. It was therefore recommended that there should be separate definitions for ME and for CFS.

It is recommended that the definition of ME outlined in the Canadian Guideline (see below) and a definition of CFS based on the National Institute for Health and Clinical Excellence (NICE) guideline be adopted in Scotland....

...We hope that this will mean people with CFS are recognised quickly and can be
assessed and reviewed to confirm a diagnosis of ME, or of CFS, where appropriate1.

1 The Scottish Good Practice Statement on ME–CFS (SGPS) was finalised following completion of the HCNA consultation.

The HCNA acknowledges that the SGPS is the recognised clinical guidance on the diagnostic approach to ME–CFS.

This is important as the SGPS also addresses the concerns raised by the Scottish Neurosciences Council regarding the use of the Canadian Consensus Document as a diagnostic tool.
http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf

Gods know what that refers to. Maybe y'all can figure it out whilst I am away to middle England. TTFN :thumbsup:
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
After reading more, & thinking further, about the CPG vote.
It seems that the vote was fundamentally a choice between neurological ICD10 G93.3 and 'all undefined fatiguing illnesses'.
I personally think the 'ME' vs 'CFS' discussion is a bit of a distraction, as the terms don't mean much unless both 'ME' and 'CFS' are defined.
But they are defined in the ScotPHN report, so maybe that's what the members/voters had in mind.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Scottish Good Practice Statement on ME-CFS 2010
http://www.show.scot.nhs.uk/App_Shared/docs/MainDoc.pdf
"The Scottish Parliament Cross Party Group on M.E. is also strongly supportive of the Canadian Consensus Document definition."

Reference:
Cross Party Group on ME. Legacy Report. Scottish Parliament, Edinburgh, 2007


Scottish Cross-Party Group: legacy paper (2007)
MEA website. April 11, 2007
"...the Group proposes the adoption of the diagnostic and treatment protocol produced by Carruthers et al (often referred to as the ‘Canadian’ definitions)..."
http://www.meassociation.org.uk/?p=121
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Action for M.E. comment on CPG demise
24 October 2012

The Scottish Parliament’s Cross Party Group on M.E.’s secretary has announced that the group no longer exists.
Her announcement follows the resignation of a number of MSPs including convenor Mary Fee and her deputy Siobhan McMahon.
The MSPs resignations came after a heated and at times acrimonious debate and vote at the most recent meeting of the group over use of the term CFS.
Action for M.E. Chief Executive Sonya Chowdhury said, “The demise of the CPG is a major setback. The cause of people with M.E. in Scotland can only be furthered through a constructive dialogue with key decision makers such as MSPs.
“Action for M.E. remains committed to Scotland and a collaborative approach to achieving better services and support for M.E. patients and driving research into the biological nature of this terrible condition. We will continue to endeavour to work with all key stakeholders.”

http://www.actionforme.org.uk/get-i...-hub-news/action-for-me-comment-on-cpg-demise
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
From my understanding the ME/CFS CCC definition was based on ME, not CFS. Its CFS in name only. If I recall correctly those who developed the CCC said as much several times. The definition is ME, but the name includes CFS. This was political. The ICC, developed in part by the same people, deliberately got rid of the CFS label.

CFS/ME is however CFS with a label of ME, as far as I see it practiced in the UK. CFS/ME and ME/CFS are not necessarily the same.

So adoption of CCC is really ME with a nod to CFS - its the same principle as calling CFS CFS/ME, but with an ME definition at the core. If anyone has evidence this is not the case I would be interested in seeing it.

Bye, Alex
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
From my understanding the ME/CFS CCC definition was based on ME, not CFS. Its CFS in name only. If I recall correctly those who developed the CCC said as much several times. The definition is ME, but the name includes CFS. This was political. The ICC, developed in part by the same people, deliberately got rid of the CFS label.

Yes, that's my understanding as well, Alex. The authors have since said that they included 'CFS' in the CCC only for political reasons.
 

Yogi

Senior Member
Messages
1,132
There is 15 pages of comment but we are none the wiser about what has happened with the CPG vote debacle. To focus the debate:


Mary Fee MSP seems to have been one of the best Parliamentarians to stand up for ME and she was clear about the neurological basis for it. The evidence for this is:


http://www.actionforme.org.uk/Resources/Action for ME/Documents/MSP invite.pdf

The World Health Organisation recognises M.E. as a neurological condition.



http://www.meassociation.org.uk/?p=11194

M.E. is recognised by the World Health Organisation as a neurological condition and can result in muscle pain with intense physical or mental exhaustion, relapses and specific cognitive disabilities.



1. Therefore who specifically are the ME activists and what specifically have they done to force her to resign?
2. The vote mentioned above does not make sense as the CPG and Mary Fee believes ME (and CFS) are neurological (ICD-10 G93.3)?
3. Have the activists made a public statement in response to this debacle?
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
1 The Scottish Good Practice Statement on ME–CFS (SGPS) was finalised following completion of the HCNA consultation.
The HCNA acknowledges that the SGPS is the recognised clinical guidance on the diagnostic approach to ME–CFS.
This is important as the SGPS also addresses the concerns raised by the Scottish Neurosciences Council regarding the use of the Canadian Consensus Document as a diagnostic tool.http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf
Gods know what that refers to. Maybe y'all can figure it out whilst I am away to middle England. TTFN :thumbsup:

Discovered a letter from the Scottish Neurosciences Council 23 June 2010 in reference to their concerns over the CCC from this website: http://www.cathcartmesupportgroup.org.uk/2.html

Dear Mr Scott

Scottish Good Practice Statement on ME-CFS: Initial Comments from Scottish Neurosciences Council

In response to the circulated draft of the Good Practice Statement on ME-CFS we wish to document some initial comments from the Scottish Neurosciences Council. We think that in general terms guidance on the management of ME-CFS is to be welcomed and we recognise it as a real and disabling condition. We also recognise the considerable amount of work that the various patient representatives have put into this document thus far.

However, with reference to the WHO classification G93.3 Post Viral Fatigue Syndrome including Benign Myalgic Encephalomyelitis under Disorders of the Nervous System we consider some expert comment from the SNC to be appropriate, particularly as we have a number of concerns about some technical aspects of the circulated version of the Good Practice Statement.

• In section 2, under the heading ‘Criteria’, at point 5 on page 7, the statement says that ‘ataxia, muscle weakness and fasciculations are common’. This seems to be drawn from the Canadian consensus document. The Council takes the view that the ‘hard’ neurological signs of ataxia or fasciculations never occur in ME-CFS. Where these signs do occur, they have very specific clinical implications, and would indicate a diagnosis such as Motor Neurone Disease (MND) or similar. There is a strong concern that by including these symptoms in its core description of the condition, the statement would lead to misdiagnosis both of those with those with ME-CFS and with other unrelated neurological diseases. We would suggest there is no advantage in departing from the NICE ME-CFS Guideline (2007) in terms of disease definition.

• By including comment on such untested techniques as mitochondrial testing the document gives them credence: the description of this in section 5, page 25, is not sufficiently sceptical. In particular, it doesn’t mention that treatment is offered on the basis of the tests without any involvement of the person’s GP, that there has never been any independent replication of the findings and that the only published results are in a ‘pay-to-publish’ internet journal in a study conducted by the purveyors of the test.

• The statement is too dismissive of the Cochrane and NICE work, which indicate that CBT and GET are, at present, the only treatments known to be effective (at Grade 1 evidence level) - albeit not in all patients. It may have been beneficial to see if it was possible to gain preliminary data on the acceptability and safety of such treatments from the PACE study (ie a randomised design) rather than relying on survey data, a technique which is highly liable to response bias.

• In terms of pharmacological management, the statement simply lists a range of largely untested treatments, but gives the GP no real assistance about what he or she should be doing. The comment on thyroxine (page 20) is an example of the sort of approach, which we think this section should be adopting. By contrast, the statement on nimodipine is mildly enthusiastic towards an untested treatment; the SNC understand the theory behind such a recommendation relates to some results from SPECT scanning studies, but it appears to misunderstand the principles behind such imaging techniques.

• We think much more guidance is need on a triaged approach to tests and investigations

• In general terms, the statement does not dovetail well the NHS QIS Clinical Standards for Neurological Conditions (2009), which are much more about the need for integration of all forms of treatment, including psychological aspects.

We hope these comments will be of some help in taking this valuable piece of work forward.

Yours sincerely,

Dr Robin Sellar
President,
Scottish Neurosciences Council
Mr Douglas Gentleman
Honorary Secretary,
Scottish Neurosciences Council
Dr Alan Carson Convenor of Working Group
Scottish Neurosciences Council

http://www.cathcartmesupportgroup.org.uk/resources/SNC letter_June2010.pdf

So it would appear from this limited search result of mine, that a draft of the Statement was circulated to include the Neurosciences council, who expressed their concern, resulting perhaps in a somewhat, how shall I say it, 'more realistic' or 'diluted', final Statement to be produced.

Since then, 'lobbying' has occurred in an unsuccessful attempt to separate 'ME' (as defined variously), from 'CFS' (which is now being associated with just about anything else involving 'fatigue' as a symptom in some people's minds).

And in the meantime (and even before) science has failed to prove buggar all through pathology, which is the only means by which this whole kerfuffle will ever be resolved.

Clinical definition of 'ME' might be argued as distinctive from 'CFS' but not in the research arena. What would happen, for example, to all the studies relating to 'CFS' using 'Fukuda'? I mean if you take all of them out of the equation....!

Worth noting perhaps references anyway to psychological interventions. I think some are convinced that a separation and unique definition of 'ME' will result in some improved treatment options that do not involve perceived psychological interventions. Rather naive I think even and especially for any neurological disorder but even those for whom a 'cause' has been identified.

Of course we will never, here, get to the bottom of what happened to disband this CPG. Even the minutes do not reveal all that happened; and as Yogi says above, unless we hear from Mary Fee and the others exactly why they felt the need to resign, and what/who prompted their decision - we are in darkness.

Still, I shall be intrigued to read of your deliberations when I return.

Edit: Have edited further.... :)
 
Messages
13,774
Thanks for that Fire.

I've still not got any idea what went down or why.

I wonder what interpretation of PACE the Scottish Neurosciences Council wanted?

If the document they were criticising was promoting purely experimental treatments, then I think that this is a mistake - I'd generally prefer a much more cautious and sceptical approach to the promotion of treatments.

The Council takes the view that the ‘hard’ neurological signs of ataxia or fasciculations never occur in ME-CFS.

Is this view right?

Just looking in to what ataxia is, and how it's diagnosed, it seems like a rather bold claim from The Council.

The fact that they write in such a confident manner means that I feel emotionally more drawn towards trusting what they say... despite the fact that it should make me more suspicious.

I was reminded of this section from White's book on BPS:


Aylward: There seems to be an antipathy in some part of Government towards anything that is perceived as fuzzy or nebulous, without a hard evidence base. If the BPS approach is perceived in this way and is competing for investment with hard policies focusing on bed occupancy and delivery of acute services, it is very difficult to get the Department of Health, among others in Government, to favour health-focused interventions and rehabilitation adopting the BPS approach. But in recent month I'm beginning to see a change. The Department for Work and Pensions may now have been persuaded to invest in initiating pilot studies in various areas of the country, in particular involving benefit recipients with back pain and fatigue, to see if all the talk about the BPS approach has any basis in improving outcomes.

Wessely: What made some of the policy makers change their views?

Aylward: Systematic reviews of the literature garnering evidence to support the BPS concept. Identifications of best practices in using BPS approaches that improve function and rates of return to work, particularly in people with disability caused by back pain. Recent meeting in the form of focus groups of key oppinions makers support with authorative and expert opinion the value of BPS approaches. There are going to be some developments soon.

Wessely: What kind of evidence caused change?

Aylward: The evidence which has been there all along. The key aspect has been effectively communicating the evidence in a far more robust and authoritative way. We also ran a series of workshops where we discussed and evaluated various approaches to facilitate return to work and to address the rising numbers of people in receipt of incapacity benefits. Some £25 billion per year is being spent on state benefits resting either directly or indirectly on a medical basis. The prospect of effective interventions that might reduce that expenditure are powerful catalysts for change.

Waddell: To take this a stage further, I am not sure that evidence is what convinces people. We do need an evidence base, but it is ideas that really influence people. People go to war for ideas, not for evidence. When you look at changing practice, it is really about ideas rather than evidence. My hesitation about what was said earlier is that everything seem to show the the behaviour of health professionals is difficult to change. But there are some suggestions from the Australian education campaign, Kate Lorig's work, and our work in Scotland, that it may actually be easier to change patients and the public and they will then force the professionals to change. The information from Australia has helped tremendously [1,2]. Some decision makers were very jaundiced, but this has played a role in convincing them that there is something in that and that it will save money. It's all about money. The main thing was to persuade the treasury that there was an opportunity for keeping costs down, particularly over the longer term.

Maybe my desire for a more cautious and sceptical approach is poor politics (or psychology).
 
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15,786
So a bunch of neurologists objected to ME being diagnosed and treated as a physiological disease ... surprise! They probably just rewrote a letter regarding MS from 30 years ago and changed it slightly to reflect the different names and diagnosing criteria :p

I'm not sure why neurologists are afforded such prestige - historically they seem to be one of the specialties with the most members that are incapable of intelligent and independent thought.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
They don't take the claim of ataxia seriously, nor that of other neurological issues. Most people with CFS (Fukuda I think) have gait ataxia. We have other neurological signs and symptoms too. In fact under strict ME neurological signs are important. So if they consider neurological signs mean a person cannot have CFS, why are they not in favour of ME and CFS being separate diagnoses?
 
Messages
13,774
Most people with CFS (Fukuda I think) have gait ataxia.

Do you know of any evidence on this? I couldn't find much either way.

Also, the Mayo Clinic guide on diagnosing ataxia seemed to have significant differences to the NHS one - could this explain the different views?

This is the sort of research area I'd normally avoid, but I'm a bit curious now.

These two (old) references are mentioned as supporting an association between CFS and ataxia:


  • Komaroff A in Hyde D (ed.) The clinical and scientific basis of myalgic encephalomyelitis/chronic fatigue syndrome. The Nightingale Research Foundation, Ottawa, Ont. Canada. 1992: 228-34.
  • Buchwald D et al. Ann Int Med 1992; 116:103-113.
in this piece which seems to be saying there is not really an association (kind of) :

http://www.cfids.org/archives/2000rr/2000-rr4-article03.asp

It also says things like "MS patients rarely report cognitive problems, but cognitive problems are common in CFS patients", which doesn't fit with what I've read about MS, or been told by someone with MS.

If different people are diagnosing CFS in different ways, and diagnosing ataxia in different ways, then working out whether there is 'really' any association would seem rather difficult.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The evidence on gait ataxia is OLD. I read it like a decade ago. I will look for it.

The CCC mentions ataxia in the diagnostic definitions:
5. Neurological/Cognitive Manifestations: Two or more of the following
difficulties should be present: confusion, impairment of
concentration and short-term memory consolidation, disorientation,
difficulty with information processing, categorizing and word
retrieval, and perceptual and sensory disturbances…e.g., spatial instability
and disorientation and inability to focus vision. Ataxia,
muscle weakness and fasciculations are common. There may be
overload1 phenomena: cognitive, sensory…e.g., photophobia and
hypersensitivity to noise…and/or emotional overload, which may
lead to crashŽ2 periods and/or anxiety.

Motor Disturbances: Ataxia, muscle weakness and fasciculations,
loss of balance and clumsiness commonly occur. There may be an inability
to automatically attune to the environment, as in accommodating
footfall to irregular ground while walking and temporary loss of
basic habituated motor programs such as walking, brushing ones teeth,
making the bed and/or dialing a telephone.

Or this: http://www.meactionuk.org.uk/what_is_me_what_is_cfs.pdf which discuses it briefly.

There was a paper that did gait analysis, I am still looking for it.
 

Ember

Senior Member
Messages
2,115
Discovered a letter from the Scottish Neurosciences Council 23 June 2010 in reference to their concerns over the CCC from this website: http://www.cathcartmesupportgroup.org.uk/2.html

So it would appear from this limited search result of mine, that a draft of the Statement was circulated to include the Neurosciences council, who expressed their concern, resulting perhaps in a somewhat, how shall I say it, 'more realistic' or 'diluted', final Statement to be produced (emphasis added).
.
Health care needs assessment of services for people living with ME–CFS – short version for patients

Scottish Public Health Network (ScotPHN)

Phil Mackie
Rona Dougall
Ann Conacher
September 2011

Recommendations​
1. It is recommended that the clinical, symptomatic definition of ME​
outlined in the Canadian guideline be adopted in Scotland.​
2. It is further recommended that a symptomatic definition of CFS, based​
on that proposed in the NICE guideline, be adopted in Scotland.​
3. a) There is an urgent need for a sound epidemiological study of ME​
and CFS in Scotland; in which regard consideration should be given to​
including ME and CFS within the Scottish Health Survey.​
b) Routine reporting of ME and CFS should be considered within the​
context of developing information systems for long-term conditions​
monitoring under the Quality and Outcomes Framework (QOF).​
4. The existing research strategy in Scotland in relation to ME and CFS​
research should be reviewed by the Chief Scientist’s Office and a new​
strategy developed, aimed at broadening the evidence base for​
ME–CFS. To ensure effective communication of the existing, diverse​
evidence base, consideration could be given to developing a centre for​
research excellence and dissemination.​
http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf
 
Messages
13,774
I will look for it.

Don't worry if it's a trouble. It's easy to spend a lot of time hunting for some half-remembered study! Thanks for the offer though.

I could always look up the Canadian Criteria, and see what their reference for the claim is. (PS: they didn't seem to have one).
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
.
Health care needs assessment of services for people living with ME–CFS – short version for patients

Scottish Public Health Network (ScotPHN)

Phil Mackie
Rona Dougall
Ann Conacher
September 2011

Recommendations​
1. It is recommended that the clinical, symptomatic definition of ME​
outlined in the Canadian guideline be adopted in Scotland.​
2. It is further recommended that a symptomatic definition of CFS, based​
on that proposed in the NICE guideline, be adopted in Scotland.​
3. a) There is an urgent need for a sound epidemiological study of ME​
and CFS in Scotland; in which regard consideration should be given to​
including ME and CFS within the Scottish Health Survey.​
b) Routine reporting of ME and CFS should be considered within the​
context of developing information systems for long-term conditions​
monitoring under the Quality and Outcomes Framework (QOF).​
4. The existing research strategy in Scotland in relation to ME and CFS​
research should be reviewed by the Chief Scientist’s Office and a new​
strategy developed, aimed at broadening the evidence base for​
ME–CFS. To ensure effective communication of the existing, diverse​
evidence base, consideration could be given to developing a centre for​
research excellence and dissemination.​
http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_09_Final.pdf

That is the 'needs assessment' not the Statement and as I said I have not been able to understand what impact or power this assessment has (or has had) on any health authority. It does not appear to have changed the Statement for example, although I dare say it gave 'hope' to some patients and caused confusion among others including perhaps doctors.

It was the draft Statement of Good Practice ME-CFS from NHS Scotland - that was sent to the Neurosciences Council and to which they replied in their letter above (there were probably further exchanges I don't know). The published Statement does reference the CCC, but as per my previous extract from page 3 - it does not separate CFS from ME based on this clinical definition.

Statement published 2010: http://www.show.scot.nhs.uk/App_Shared/docs/MainDoc.pdf and I took the Statement as being equivalent to the NICE Guideline in being a best practice document.

Page 5:

DIAGNOSTIC CRITERIA
A number of diagnostic criteria have been proposed for ME‐CFS, including the Oxford (1991),8 the US Centers for Disease Control and Prevention (CDC – Fukuda ‐ 1994)9 the Canadian Consensus Document (2003)10 and NICE Guideline (2007)4 definitions, but no one set has been universally agreed.

This important issue is discussed in greater detail in Section 6. (The Canadian Consensus Document definition is provided in Appendix 2, including a list of differential diagnoses, exclusions and possible co‐morbidities).

Section 6 from page 32:

Diagnostic Criteria
Good epidemiological studies pivot on robust case definitions and diagnostic criteria. Regrettably, available diagnostic criteria for ME‐CFS continue to prove controversial.

As previously indicated, a number of diagnostic criteria have been proposed for ME‐CFS, including the Oxford (1991),8 the US Centers for Disease Control and Prevention (CDC – Fukuda ‐ 1994)9 the Canadian Consensus Document (2003)10 and NICE Guideline (2007)4 [and now the ICCME!] definitions, but no one set has been universally agreed.

Characteristics of the main available criteria are discussed in the NICE Guideline4 and in the Scottish Public Health Network’s Health Care Needs Assessment of Services for people living with ME‐CFS, which also provides a summary comparison of the different diagnostic criteria.26 [2010 version Health Care Needs Assessment of Services for people living with ME‐CFS. Scottish Public Health Network (ScotPHN) 2010. See:
www.scotphn.net/projects/current_projects/care_needs_for_those_experiencing_cfs_me/]

Most research to date has been based on the US Centers for Disease Control and Prevention (CDC ‐ Fukuda definition ‐ 1994),9 while the more recent Canadian Consensus Document definition (2003 – see Appendix 2)10 is favoured by a number of patient groups, including UK based ME‐CFS charities, as they believe it better reflects patients’ experience of the illness.

The Scottish Parliament Cross Party Group on M.E. is also strongly supportive of the Canadian Consensus Document definition.61 It has been adopted for general use in Australia and New Zealand. The Gibson Inquiry (2006) recently reviewed diagnostic criteria and concluded that the Canadian Consensus Document definition was a useful contribution to defining the clinical condition of MECFS.62

Reflecting the lack of accord, the Scottish Public Health Care Network’s Health Care Needs Assessment of Services for people living with ME‐CFS, has recommended the ‘pragmatic use’ of the Canadian Consensus Document for the clinical, symptomatic definition of ME.

The Scottish Neurosciences Council has expressed concerns about some aspects of the Canadian Consensus Document definition – particularly the need for the safe diagnosis of neurological abnormalities and potential misdiagnosis in individuals who present with ataxia, muscle weakness and fasciculations.

However, this present guidance makes clear in Section 2 that neurological examination must be done routinely in the differential diagnosis of ME‐CFS, to exclude specific neurological abnormalities such as: obvious muscle wasting, ptosis, upper motor neurone signs, ataxia, fasciculations, absent reflexes.

If any of these abnormalities are present, neurological specialist referral is recommended for further investigation:

When the Canadian Consensus Document definition is used to assist the diagnosis and management of ME‐CFS, clinicians should carefully adhere to this specific neurological referral recommendation.

During the preparation of this guidance, it became clear that diagnostic criteria for MECFS is a key and polarising issue, which threatens to impede much needed service improvements for patients. There is a strong case for there to be a further professional and scientific re‐appraisal of the diagnostic criteria for ME‐CFS, including subgroup analysis, taking into account patient experience of the illness. In order to achieve this, it is imperative that patient groups and health professionals seek to move forward and work more closely together.

The Needs Assessment from 2011 may well have some greater impact if indeed it is recommended a 'split' in the outcome of diagnosis based on CCC for 'ME' and NICE for 'CFS'. I do not know to what extent that later publication will impact upon the above or, indeed, how 'any old' 'fatiguing illness' became attached to 'CFS' in the vote.

If the Statement was published in 2010 it may be that it's due for review. However, I have to ask how many of those pushing for change and 'better recognition' for 'ME' will want to ditch CCC in favour now of ICC. And who's to say that next year we won't have another volte face?

Alex - I would be interested to learn what 'neurological SIGNS' you seem to think people with ME display, please. This has been a bone of contention for many years now. Remember 'SIGNS' are not 'SYMPTOMS'. Not that you need me to underline that point.

Page 6 of the Scottish Statement:

• Neurological symptoms – muscle twitches, spasms and weakness ‐ are common occurrences.

Page 7 and 8:

In terms of differential diagnosis, fatigue is a very common presentation in general practice. In addition to assessment for physical causes, mental state examination should be carried out to identify patients with major depressive disorder or panic disorder with agoraphobia.

Questions should be tailored enquiring about the ability to enjoy anything (including those activities the patient is physically capable of) and ‘situationally‐specific’ somatic symptoms of panic (ie chest pain, palpitations, dizziness, weakness after a typical time gap on leaving the house). This can be the sole cause of persistent fatigue or present as important and reversible co‐morbid disorders.

Some patients presenting with complaints of persistent fatigue and/or pain will have somatisation disorder; previous frequency and history of medical contact should be reviewed.

Features suggestive of other disorders or requiring further investigation

Fatigue is a symptom of many diseases and therefore a definitive list is not possible. The following should be regarded as ‘red flags’ for alternative diagnostic explanations, as part of the process of differential diagnosis:

• Substantive unexplained weight loss
• Objective neurological signs
• Symptoms or signs of inflammatory arthritis or connective tissue disease
• Symptoms or signs of cardio‐respiratory disease
• Symptoms of sleep apnoea
• Clinically significant lymphadenopathy

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Tests or investigations that are not currently indicated in clinical practice

Laboratory tests not indicated:
• Vitamin B12 & folate (where normal FBC)
• Candida albicans
• Fibrinogen
• Lactate dehydrogenase
Mitochondrial testing
• Platelet activation
• Protein electrophoresis
• Prothrombin fragment 1&2
• Soluble fibre monomer
• Thrombin‐antithrombin complexes
• Xenotropic murine leukaemia virus‐related virus (XMRV) serology

Other investigations not indicated:
• Magnetic Resonance Imaging (MRI) brain scan (in the absence of objective neurological signs)
• Tilt table testing (in the absence of unexplained syncope or other clinical
indications)
• Auditory brainstem responses
• Electroencephalography (EEG)
• Electrodermal activity
• Positron Emission Tomography (PET) imaging
• Single Photon Emission Computed Tomography (SPECT) imaging


Well that's me done for now. Thanks all. Best pack me case :)