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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Simon Wessely wins prize for "Standing Up For Science."

Bob

Senior Member
Messages
16,455
Location
England (south coast)
"(b) The Oxford criteria include a greater number of patients with CFS, by not requiring a specific number of additional symptoms, as other definitions of CFS do. (We wanted to make sure our findings applied to the greatest number of patients.)"

i.e. the most muddled, most heterogeneous, and least selective, cohort possible. :rolleyes:
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Bob, thanks for the link, I think I read it once before but that was before I started writing a book. Yes, I consider the Oxford criteria to be the most heterogenous and least useful for research of all the definitions. As a wastebasket diagnosis it is however perfect, a huge grab bag of misunderstood, undiagnosed and misdiagnosed patients. Bye, Alex
 

biophile

Places I'd rather be.
Messages
8,977
Some brief comments:

1) The London criteria "version 2" as used in the PACE Trial does require "exercise-induced fatigue" or increased fatiguability compared to pre-illness, but does not require general fluctuation of symptoms due to exertion or post-exertion symptom exacerbation, nor "post-exertion neuroimmune exhaustion", nor "post-activity relapse", etc.

2) Participants in the PACE Trial had to meet operationalized Oxford criteria which seemingly required that fatigue must be the only main symptom. The exact wording in the unabridged protocol is: "Is your fatigue (or a synonym), the principal (main, primary) symptom (e.g. tiredness, lack of energy, weariness, exhaustion)?" The 2011 Lancet paper cleverly reiterates that the PACE results apply to patients "only if fatigue is their main symptom". In contrast, the original Canadian criteria allows multiple main symptoms and fatigue does not have to be the primary symptom, while later revisions do not even require fatigue for diagnosis as long as other criteria are met.

3) [@Bob] The NICE guidelines (and Reeves et al 2003 recommendations for the Fukuda criteria) were only used for medical assessment to exclude alternative diagnoses, not to diagnose CFS. This was because the Oxford criteria is too sparse on details to standardize such assessments for a trial. However, some ambiguity still remains

4) The Oxford definition paper actually states that the intention of the criteria was to reduce heterogeneity in research. Instead it has done the exact opposite and ironically increased it, which in hindsight is unsurprising.
 

Enid

Senior Member
Messages
3,309
Location
UK
I do find the "proven organic brain disease" exclusion a bit of their typical vagueness. It is only within very recent years that MRI brain scans have been done (mine revealing "high intense" areas) - so they were not in a position to identify then.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Hi alex3619,

I didn't know about the claim re fibromyalgia patients. But they would still have to have met the Oxford ('CFS') entry criteria.

The Oxford criteria was used as the recruitment criteria, which, as you have said, only requires fatigue.

Oxford is probably the weakest (least selective) 'CFS' criteria, and it could be argued that it doesn't even select for CFS patients (let alone ME-diagnosed patients), if comparing it to internationally recognised CFS criteria, which I think always (?) require other symptoms to be present.

If I've got the correct criteria, here, Oxford only requires fatigue, and not post-exertional malaise, or increased post-exertional fatigue, or any other symptoms:


But I've recently re-read the NICE guidelines, and they don't seem much different to Oxford.
The NICE guidelines only recommend that the diagnosis is 'reconsidered' if fatigue is present but some other NICE-specified symptoms are not present:


Although I don't quite understand this, because the guidance says that the possibility of CFS should only be considered if post exertional malaise is present... Clearly this must be just a 'recommendation':


Does anyone understand that discrepancy?

I've never studied the NICE guidelines closely.
I think I will soon.

I don't know how this thread has entered (again) into either PACE or diagnostic criteria, but, anyway, I am grateful to Alex for those "PACE don't include that ME! Yes it does. No it doesn't" references. I had only seen the repeated and assumed short quote from White plastered all over the place before. Not saying that the waters are any less murkier but it helps to have read what Alex has posted.

NICE spoke in terms of the presentation of symptoms i.e.. clinical presentation a la e.g. Map of Medicine which replicates NICE for use by GPs in their surgeries as easy reference guides. I mention this because as a flow chart it is perhaps easier to see the presumed process and better understand from where they are coming.http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf

This is only the first entry:

Clinical presentation

Chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) is clinically unexplained, persistent or relapsing fatigue lasting more than 4 months in adults and 3 months in children and young people, which meets criteria for CFS/ME [1].
The main symptom of CFS/ME is severe fatigue following mental or physical activity which [3]:
  • does not go away with sleep or rest
  • limits usual activities
Other common symptoms include [3]:
  • muscular pain or joint pain without swelling or redness
  • severe headaches, diffuse headache, and/or worsening migraine
  • poor short-term memory and concentration
  • difficulty organising thoughts and finding the right words
  • painful lymph nodes (small glands of the immune system)
  • abdominal discomfort and other problems of irritable bowel syndrome (IBS)
  • sore throat
  • sleeping problems (disturbed sleep), unrefreshing sleep
  • sensitivity or intolerance to light, loud noise, alcohol, and certain foods
  • psychological difficulties, such as depression, irritability, and panic attacks related to the fatigue
Less common symptoms include [3]:
  • dizziness
  • excess sweating
  • balance problems
  • difficulty controlling body temperature
  • irritable bladder [4]
Symptom severity [3]:
  • mild:
    • person is able to care for themselves, but may need days off work to rest
  • moderate:
    • person may have reduced mobility, and symptoms can vary
    • they may also have disturbed sleep patterns, and sleep in the afternoon
  • severe:
    • person is able to carry out minimal daily tasks, such as brushing teeth
    • occasionally they may need to use a wheelchair
    • they may also have difficulty concentrating
  • very severe:
    • person is unable to carry out any daily tasks for themselves and needs bed rest for most of the day
    • they may also experience an intolerance to noise and become very sensitive to bright lights
  • most cases are mild or moderate, but up to one in four people with CFS have severe or very severe symptoms
  • CFS/ME symptoms will fluctuate in severity and may change over time

It is rather thorough I feel given the circumstances (i.e. our lack of aetiology etc.) though the question remains in my mind, "How many GPs (or specialists) follow or are able to follow these guidelines thoroughly enough to ensure as correct a diagnosis as is currently possible?"

Still. It's what we have...


 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
NICE spoke in terms of the presentation of symptoms i.e.. clinical presentation a la e.g. Map of Medicine which replicates NICE for use by GPs in their surgeries as easy reference guides. I mention this because as a flow chart it is perhaps easier to see the presumed process and better understand from where they are coming

NHS Choices said:
Access to the Map of Medicine evidence based clinical knowledge system is currently licensed for English and Welsh residents only.

I'm hoping I'm not missing out on much.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Some brief comments:

1) The London criteria "version 2" as used in the PACE Trial does require "exercise-induced fatigue" or increased fatiguability compared to pre-illness, but does not require general fluctuation of symptoms due to exertion or post-exertion symptom exacerbation, nor "post-exertion neuroimmune exhaustion", nor "post-activity relapse", etc.

2) Participants in the PACE Trial had to meet operationalized Oxford criteria which seemingly required that fatigue must be the only main symptom. The exact wording in the unabridged protocol is: "Is your fatigue (or a synonym), the principal (main, primary) symptom (e.g. tiredness, lack of energy, weariness, exhaustion)?" The 2011 Lancet paper cleverly reiterates that the PACE results apply to patients "only if fatigue is their main symptom". In contrast, the original Canadian criteria allows multiple main symptoms and fatigue does not have to be the primary symptom, while later revisions do not even require fatigue for diagnosis as long as other criteria are met.

3) [@Bob] The NICE guidelines (and Reeves et al 2003 recommendations for the Fukuda criteria) were only used for medical assessment to exclude alternative diagnoses, not to diagnose CFS. This was because the Oxford criteria is too sparse on details to standardize such assessments for a trial. However, some ambiguity still remains

4) The Oxford definition paper actually states that the intention of the criteria was to reduce heterogeneity in research. Instead it has done the exact opposite and ironically increased it, which in hindsight is unsurprising.

Just to clarify. Oxford was used as the recruitment criteria for PACE.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
NICE spoke in terms of the presentation of symptoms i.e.. clinical presentation a la e.g. Map of Medicine which replicates NICE for use by GPs in their surgeries as easy reference guides. I mention this because as a flow chart it is perhaps easier to see the presumed process and better understand from where they are coming.

Unfortunately, Firestormm, I think that what you have quoted is not the diagnostic criteria, which seems to be as follows:

NICE said:
Confirm diagnosis

Guidelines from the National Institute for Health and Clinical Excellence (NICE) state that doctors should consider diagnosing chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) if a person has fatigue with [1,3]:
  • all of the following:
    • a clear starting point
    • persistent and/or recurrent
    • unexplained by other conditions
    • a substantial reduction in activity level
    • characterised by post-exertional malaise and/or fatigue (feeling worse after physical activity)
  • plus one or more of the following:
    • difficulty sleeping or insomnia
    • muscle and/or joint pain without inflammation
    • headaches
    • painful lymph nodes that are not enlarged
    • sore throat
    • cognitive dysfunction, such as difficulty with thinking
    • physical or mental exertion that makes symptoms worse
    • general malaise or flu-like symptoms
    • dizziness and/or nausea
    • palpitations without heart disease
This diagnosis should be confirmed by a clinician after other conditions have been ruled out and the above symptoms have persisted for four months in an adult and three months in a child or young person [1,3].

The nature of the 'fatigue' doesn't seem very well defined. It just says: "characterised by ... fatigue (feeling worse after physical activity)", but "feeling worse after physical activity" is the nature of fatigue anyway, and it's not the same as delayed post-exertional-malaise.

And then guidelines go on to say:

NICE said:
The diagnosis of CFS/ME should be reconsidered if none of the
following key features are present:
• post-exertional fatigue or malaise
• cognitive difficulties
• sleep disturbance
• chronic pain.

Note that it does not say the diagnosis should be excluded, only that it should be 'reconsidered'.

So it seems that, with NICE, it is possible to make a diagnosis with simple fatigue, and one other symptom, such as: 'difficulty sleeping', or 'headaches'.

(Sorry, this is all off-topic. If anyone can clarify any of this, or point me towards a relevant critique of the NICE guidelines, I'd be grateful.)
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I posted this on another thread, but it belongs here too:


http://pps.sagepub.com/content/7/6/689.full.pdf html
This one is particularly interesting. DSM-V is claiming a new psychiatric disorder, it sounds familiar:

DSM-5 Task Force Proposes Controversial
Diagnosis for Dishonest Scientists
Matthew J. Gullo1 and John G. O’Gorman2
[Alex: these researchers are based in my two universities that I studied at]

The essential feature of pathological publishing is the “persistent
and recurrent publishing of confirmatory findings (Criterion
A) combined with a callous disregard for null results
(Criterion B) that produces a “good story” (Criterion C), leading
to marked distress in neo-Popperians (Criterion D).” Diana
Gleslo, M.D., who chairs the task force developing the fifth
edition of the Diagnostic and Statistical Manual of Mental
Disorders (DSM-V), said the new diagnosis will help combat
the emerging epidemic of scientists engaging in questionable
research practices. “The evidence is overwhelming,” Gleslo
told reporters. “We can no longer dismiss this as merely ‘a
few bad apples’ trying to further their career. This is a medical
condition—one we fear may be highly infectious.”

Alex again. This very claim is a whole chapter in my book. I was claiming it as a philosophical failure, and yes I am a neo-Popperian (actually a pan critical rationalist). It is highly amusing to me that DSM-V classifies it as a psychiatric disorder.

Bye, Alex

PS Please note this DSM-V article was satire and not serious, as pointed out by Suzi Chapman. It however exactly matches an argument I am constructing against the irrational claims made by people pushing the dysfunctional belief model of CFS.

Many claims and processes made and used by those pushing the DBM of CFS match the processes claimed by many logicians of science for nonscience and pseudoscience.
 

biophile

Places I'd rather be.
Messages
8,977
http://www.senseaboutscience.org/pages/a4e_what_we_can_do.html
What we can do

You don’t need to be a scientist to ask for evidence. Anyone can pick up the phone or send an email asking for evidence behind any claim. But if you need more help, Sense About Science has hundreds of organisations and 5,000 scientists standing by.

We can help you with your response and publicise it. It might become a rallying point for others who have been frustrated by the same claim.

[...]

When we see misreported research in the papers we invite scientists to respond in our 'For the record' section, so that anyone following up or searching for more can find the scientists’ view.
Tell us about claims you see by emailing report@senseaboutscience.org.

Will Sense About Science help?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I didn't read the article since it appears I would encounter some serious British English vs. American English discrepancies. The title doesn't transfer well. "Stands up for" in Britspeak must mean the same as "tramples all over" here across the pond.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I didn't read the article since it appears I would encounter some serious British English vs. American English discrepancies. The title doesn't transfer well. "Stands up for" in Britspeak must mean the same as "tramples all over" here across the pond.

Well, they say the British have a strong sense of irony!!! But maybe this is taking it too far!
 

Enid

Senior Member
Messages
3,309
Location
UK
That's odd - I thought SW denied he was researching ME after all the kerfuffle broke out (must try to find).
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
I posted this on another thread, but it belongs here too:


http://pps.sagepub.com/content/7/6/689.full.pdf html
This one is particularly interesting. DSM-V is claiming a new psychiatric disorder, it sounds familiar:

DSM-5 Task Force Proposes Controversial
Diagnosis for Dishonest Scientists
Matthew J. Gullo1 and John G. O’Gorman2
[Alex: these researchers are based in my two universities that I studied at]

The essential feature of pathological publishing is the “persistent
and recurrent publishing of confirmatory findings (Criterion
A) combined with a callous disregard for null results
(Criterion B) that produces a “good story” (Criterion C), leading
to marked distress in neo-Popperians (Criterion D).” Diana
Gleslo, M.D., who chairs the task force developing the fifth
edition of the Diagnostic and Statistical Manual of Mental
Disorders (DSM-V), said the new diagnosis will help combat
the emerging epidemic of scientists engaging in questionable
research practices. “The evidence is overwhelming,” Gleslo
told reporters. “We can no longer dismiss this as merely ‘a
few bad apples’ trying to further their career. This is a medical
condition—one we fear may be highly infectious.”

Alex again. This very claim is a whole chapter in my book. I was claiming it as a philosophical failure, and yes I am a neo-Popperian (actually a pan critical rationalist). It is highly amusing to me that DSM-V classifies it as a psychiatric disorder.

Bye, Alex


Alex,

What you have posted is a satirical piece for Perspectives on Psychological Science:

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2148152

The DSM-5 Task Force is chaired by David J Kupfer, MD. There is no "Diana Gleslo, M.D" on the DSM-5 Task Force, in any capacity.

( Task Force: http://www.dsm5.org/MEETUS/Pages/TaskForceMembers.aspx )

If you have flagged up this piece in other threads, you might want to add a clarification that this is a satirical piece, that the chair of DSM-5 Task Force is David J Kupfer and that this is not a proposal for DSM-5.

Suzy Chapman
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Thank you Suzy. I will look into this and post a link back here.

Diana Gleslo does not have any internet existence aside from this article. The authors who wrote it do however. The abstract says this:

Abstract:
Satirical piece for Perspectives on Psychological Science.

I wonder if its an attempt to discredit counter-arguments based on exactly the points made in the satirical arguement. I also wonder at the apparent coincidence that these authors are from the same universities as me.
 

Jarod

Senior Member
Messages
784
Location
planet earth
Alex,

What you have posted is a satirical piece for Perspectives on Psychological Science:

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2148152

The DSM-5 Task Force is chaired by David J Kupfer, MD. There is no "Diana Gleslo, M.D" on the DSM-5 Task Force, in any capacity.

( Task Force: http://www.dsm5.org/MEETUS/Pages/TaskForceMembers.aspx )

If you have flagged up this piece in other threads, you might want to add a clarification that this is a satirical piece, that the chair of DSM-5 Task Force is David J Kupfer and that this is not a proposal for DSM-5.

Suzy Chapman

Dang! I really thought this was a good offensive approach. :D

Got a good laugh too.

Be funny to know how many emails and calls of support they get from this piece....!