ME/CFS diagnostic and treatment guidelines

[Guido den Broeder]

Scotland

Scotland did not accept the NICE guideline for England and Wales, but are working on their own:

Mackie Ph (2009), "Health Care Needs Assessment of Services for people living with ME-CFS - draft for consultation", 6 mei, ScotPHN report

http://www.healthscotland.com/uploads/documents/9715-Report - National Consultation Final.pdf

 

[Bob]

London Criteria (unpublished)

The London Criteria have been used in a few research studies, but they have never been published, and are therefore unofficial and cannot legitimately be used in formal research into ME.

Here's some history about the London Criteria:
http://www.meactionuk.org.uk/Ellen_and_the_London_criteria.htm

This is what Professor Hooper has to say about the London Criteria:

The “London Criteria” have no known authors; they have never been published; there is no methods paper which specifically describes them as a “case definition”; they have never been approved nor have they even been finally defined (there are various versions); they have never been validated and they are not on PubMed thus are not available for scrutiny so they cannot be accessed for comparison.
http://forums.aboutmecfs.org/showthread.php?10185-Threat-to-Professor-Hooper

 

[peterac]

most definitions, criteria and protocols are included here http://www.myalgic-encephalomyelitis.com/ and http://www.tnq-support-group.org.au/

 

[taniaaust1]

South Australia ME/CFS Guidelines

Management Guidelines for General Practitioners, 2004

that thou still was in force didnt last long as the ME/CFS society of SA (i dont know about the other Aust. states) were strongly encouraging ... From 2005 the "Overview of a Clinical Case Definition and Guidelines for Medical Practioners, An Overview of the Canadian Consensus Document" and providing this to take to peoples doctors for them to use. (My copy is 18 pages long with 2 more pages of scienctific references). http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

Also the overview document for fibromyalgia http://sacfs.asn.au/download/consensus_overview_fms.pdf

While still in use too the guidelines you mentioned (which were based some of the CC CFS)... also there was some clinical guidelines for psychriatrists when it comes to ME/CFS (i think put out around same time as the other guidelines?) which also came out of Canada .. Ive no idea if those are still in use too (link was broken). Anyway they were called "Assessment and Treatment of Patients with ME/CFS: Clinical guideline for Psychriatrists. (and where used in conjunction with the Canadian Consensus stuff).

 

[John Day]

Sensory Neuropathies exhibiting CFS, Pain and Burning

Sensory Neuropathies often begin with debilitating fatigue (CFS) prior to the onset of pain and burning.

Journal of Neurological Science 2004 Hoitsma, Reulen, Baets, Drent, Spaans & Faber
Small Fiber Neuropathy: a common and important neurological disorder

p. 53 'many patients with small fiber neuropathy complain of severe and disabling fatigue.'

http://www.ildcare.eu/Downloads/proefschriften/proefschriften_2005/Hoitsma_-_2005_-_Chapter_03.pdf

Brain 2008. Devigili, Tugnoli, Penza, Carnozzi, Lombardi, Melli, Broglio, Granieri, Lauria.
The diagnostic criteria for small fibre neuropathy: from symptoms to neuropathology

http://brain.oxfordjournals.org/content/131/7/1912.full.pdf+html

Differential diagnosis for Polyneuropathy and Neuronopathy by Alan Pestronk 2/5/2010

http://neuromuscular.wustl.edu/over/print/walwebn2ie2.pdf

Professor ANN NOELLE PONCELET UCLA An Algorithm for the Evaluation of Peripheral Neuropathy. (This doesn't appear to be posted on Phoenix Rising.)

http://www.aafp.org/afp/980215ap/poncelet.html

Steven H. Horowitz The Diagnostic Workup of Patients with Neuropathic Pain. (2007)

http://www.med.nyu.edu/pmr/residenc...n/clinics anes_dx workup neuropathic pain.pdf

Ezekiel Fink UCLA Dept. of Neurology Small Fibre Neuropathy: Answering the Burning Questions

http://www.pnhelp.org/pdf/video/Fink...Neuropathy.pdf

Brain Oxford The Pattern and Diagnostic Criteria of Sensory Neuronopathy: A Case-Control Study

http://brain.oxfordjournals.org/content/132/7/1723.full.pdf+html

Jeffrey M. Burns, MD University of Kansas, Department of Neurology Michelle L. Mauermann, MDTed M. Burns, MD University of Virginia, Department of Neurology, Charlottesville
An easy approach to evaluating peripheral neuropathy

http://www.jfponline.com/Pages.asp?AID=4452&UID

 

[Francelle]

I spent the first year of having Peripheral Neuropathy (PN) pouring over that Poncelot Algorithm article. It is an excellent article yet nowhere does it include M.E. or Fibromyalgia as a possible cause for PN. So too is the WUSTL chart an excellent summary, but it doesn't mention M.E./Fibro either. The closest diagnoses mentioned interestingly are HIV and Lyme.

So either there is a lack of recognition of these conditions (M.E./Fibro) across the board such that it is not recognised as a cause for PN or those of us with neuropathies have something else which has not been diagnosed correctly.

 

[John Day]

Clarification of a Disease - the Differential Diagnosis

Francelle, I twice replied to your message earlier but I believe there are some technical issues with the site at the moment.
Firstly, I have seen your symptoms posted elsewhere on this forum. And I am sure you have more to add to it. Are you certain you have fibromyalgia? Your sensory symptoms bear a striking resemblance to an acute onset neuropathy. Have you undertaken a Differential Diagnosis? The Poncelet article is brilliant and any Differential approach is bound to dramatically clarify the problem.

 

[WillowJ]

also there was some clinical guidelines for psychriatrists when it comes to ME/CFS (i think put out around same time as the other guidelines?) which also came out of Canada .. Ive no idea if those are still in use too (link was broken). Anyway they were called "Assessment and Treatment of Patients with ME/CFS: Clinical guideline for Psychriatrists. (and where used in conjunction with the Canadian Consensus stuff).

Do you mean this document, Tania?
Eleanor Stein, MD, FRCP(C), "Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists" http://www.cfids-cab.org/MESA/Stein.pdf

Good thing to add.

 

[Enid]

Great idea/thread this shrewsbury - sort of seperate the wheat from the chaff too.

 

[Bob]

Just tidying up some of the info on this thread, for easier reference...

CFS Definitions (listed in order of date)

CDC Holmes Definition 1988
Chronic Fatigue Syndrome: A Working Case Definition
GARY P. HOLMES et al.
http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf
http://www.cfids-me.org/holmes1988.html

Oxford Criteria 1990
A report - chronic fatigue syndrome: guidelines for research
Report of a consensus meeting held at Green College, Oxford
M C Sharpe et al.
23 March 1990
Journal of the Royal Society of Medicine, Volume 84 February 1991 118-121
http://www.theoneclickgroup.co.uk/documents/PACE/CFS Oxford Criteria 1991.pdf

CDC Fukuda criteria 1994
Complete Text of 1994 Case Definition of CFS
Fukudama et al.
Annals of Internal Medicine, Vol. 121, December 15, 1994
http://www.cdc.gov/cfs/general/case_definition/complete.html
http://www.annals.org/content/121/12/953.abstract

Canadian Consensus Criteria 2003
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
Carruthers et al. 2003
http://www.wpinstitute.org/patient/docs/CanadianDefinitionME-CFS.pdf
http://mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf
Note that the following link does not contain the full document:
http://www.cfids-cab.org/MESA/ccpccd.pdf
See andrew's post, below, for more details.

An Overview of the Canadian Consensus Document
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners
Bruce M. Carruthers, Marjorie I. van de Sande
2005
http://www.cfids-cab.org/MESA/me_overview.pdf
Translations and Various Printing formats:
http://mefmaction.com/index.php?option=com_content&view=article&id=214:overviews&catid=67&Itemid=348

CDC Empirical Definition 2005
Chronic Fatigue Syndrome A clinically empirical approach to its definition and study
William C Reeves, Dieter Wagner, Rosane Nisenbaum, James F Jones, Brian Gurbaxani, Laura Solomon, Dimitris A Papanicolaou, Elizabeth R Unger, Suzanne D Vernon, and Christine Heim.
http://www.biomedcentral.com/1741-7015/3/19

 

[WillowJ]

by the way, a reference in the literature to "CDC revised" criteria often refers to the 1994 Fukuda definition (I have seen this be a point of confusion, especially now that CDC has revised the definition yet again, though without officially announcing the replacement of the 1994 version with the 2005 version)

 

[eric_s]

I've just read some of the CDC/CAA and CAA guidelines. They're bad

 

[November Girl]

need rest of full-text canadian criteria & treatment guide

Bob, thanks for collecting these. the document noted below ends mid-sentence at page 30. does anyone know where the rest of the text can be found?

I looked at both the Canadian docs - the full one and the overview. The overview does some summarization, and therefore omits some info. i'd really like to read the whole thing.

Just tidying up some of the info on this thread, for easier reference...

Canadian Consensus Criteria 2003
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
Carruthers et al. 2003
http://www.cfids-cab.org/MESA/ccpccd.pdf

 

[Bob]

This seems to be a complete copy:

Canadian Consensus Criteria 2003
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
Carruthers et al.
2003
http://www.wpinstitute.org/patient/docs/CanadianDefinitionME-CFS.pdf

An Overview of the Canadian Consensus Document
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners
Bruce M. Carruthers, Marjorie I. van de Sande
2005
http://www.cfids-cab.org/MESA/me_overview.pdf

 

[November Girl]

Thanks Bob. Since I saw your post, I've been reading through the Carruthers et al document. i had to stop before my brain backed up! There's a lot of good info there.

 

[alex3619]

The IACFS/ME clinical primer is now out. I have started a new thread at:

http://forums.phoenixrising.me/index.php?threads/iacfs-me-clinical-primer-available.17483/

The paper can be found at: http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf

I anticipate there will be some discussion, so I thought a new thread was warranted.

Bye, Alex

 

[Andrew]

Just tidying up some of the info on this thread, for easier reference...
Canadian Consensus Criteria 2003
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols
Carruthers et al. 2003
http://www.cfids-cab.org/MESA/ccpccd.pdf

Just a heads up. The document at the end of that link is cut off at page 36. As a result, all the treatment protocols, lit review, etc. are missing. This creates a big problem, because most people don't notice this, and they miss all the important information. I contacted the site about this a long time ago, but they are not fixing this. If you want a good copy, go to http://mefmaction.com/index.php?option=com_content&view=article&id=215&Itemid=262

 

[Bob]

@LavenderGirl7 if you're seeking the Canadian Consensus Criteria, I think there's a copy here:
http://phoenixrising.me/research-2/...nadian-consensus-criteria/canadian-definition
Or here:
http://mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

 

[LavenderGirl7]

@LavenderGirl7 if you're seeking the Canadian Consensus Criteria, I think there's a copy here:
http://phoenixrising.me/research-2/...nadian-consensus-criteria/canadian-definition
Or here:
http://mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

Thanks Bob, would this be relevant to UK? Thanks for your help, I'm new here, so trying to understand the technology too.

 

[Bob]

Thanks Bob, would this be relevant to UK? Thanks for your help, I'm new here, so trying to understand the technology too.

A big welcome to the forum.

I'm not sure what you mean by "relevant to the UK"? The Canadian Consensus Criteria might be relevant to you personally, but they are not relevant to the NHS. You'll need the NICE guidelines to see what the NHS uses.