• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Identifying Defining Aspects of Chronic Fatigue Syndrome via Unsupervised Machine Learning and Featu

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I think this article may help to explain some of Jason's thinking:

To PEM or not to PEM? That is the question for case definition.
By Leonard A. Jason, Ph.D. and Meredyth Evans
DePaul University
27 APR, 2012
http://www.research1st.com/2012/04/27/pem-case-def/

It's a long article, so here are some extracts:

Jason & Evans said:
Jason and colleagues (1999) found that in a group of individuals with ME/CFS, PEM ranged from 40.6-93.8% depending on how the question of this symptom was asked. This lack of uniformity in the way PEM is measured represents a significant problem for the scientific community studying this illness.
Jason & Evans said:
Our group developed the ME/CFS Fatigue Types Questionnaire (MFTQ), which has good psychometric properties, and is designed to measure the different types of fatigue experienced by individuals with ME/CFS (Jason et al., 2009). We measured the experience of symptoms in a group of individuals with ME/CFS compared to a healthy group. We found that individuals with ME/CFS experienced several different types of fatigue including postexertional fatigue, wired fatigue, brain fog, energy fatigue and flu-like fatigue compared to the healthy group which only experienced just an overall, general type of fatigue. The MFTQ defined the factor called PEM as abnormal exhaustion following a bout of physical activity. Items from the PEM factor included:

  • Dead, heavy feeling that occurs quickly after starting to exercise;
  • Next day soreness or fatigue after non-strenuous, everyday activities;
  • Mentally tired after the slightest effort;
  • Physically drained or sick after mild activity; and,
  • Minimum exercise makes you physically tired.
In another study, the above five PEM items from the MFTQ were confirmed as having the best diagnostic sensitivity and specificity (Jason, Evans, Brown, et al. 2011).
...
These five PEM items have been included in a new diagnostic measure: the DePaul Symptom Questionnaire (DSQ), developed by our group at DePaul University to help classify people with all the major case definitions, and we currently are collecting data using this instrument.

Jason & Evans said:
Our research group feels that post-exertional malaise is a cardinal feature of ME; the definition recognizes post-exertional malaise as prolonged restoration of muscle power following either mental or physical exertion.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@Bob Thank you :) Above and beyond the call... but extremely useful. I was not aware of the above article and will read with interest later. It seems to hit the proverbial on the head! :)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I think this article may help to explain some of Jason's thinking:

To PEM or not to PEM? That is the question for case definition.
By Leonard A. Jason, Ph.D. and Meredyth Evans
DePaul University
27 APR, 2012
http://www.research1st.com/2012/04/27/pem-case-def/

It's a long article, so here are some extracts:

I am left feeling from having read the extracts, that we really need to better distinguish these symptoms from the feelings experienced after a 'normal' person 'exerts'. I am not sure current attempts really cut the mustard.

PEM has been the hardest distinguishing symptom for me to have to 'sell' to others - without a doubt. As I said before, I was often faced with the answer "Well, who doesn't feel like that?"Especially when I am in the company of my much older parents! :)

That is why for me, it is the delayed onset of a flare in symptoms from doing more than my usual day-to-day activities - which distinguishes PEM from usual symptoms. I mean as I said, I feel like I have the flu all the time. Day in and Day out.

When I rest up, my muscles for example, are in aching, burning, pain. When I am engaged in an activity - like now sat at my desk typing away - they are still aching and burning with pain, but I notice it most when I am resting because I don't have this distraction.

Last night was awful for the feelings in my calves especially for some reason. But then that's the USUAL for me and it applies to my thighs, arms and chest also. It is like having the flu minus the snot!

PEM is delayed. It is the result of overdoing something - like including a walk in my usual routine on a Monday or Thursday when I am editing - or spending too long on an article editing - or pushing myself beyond what I feel comfortable in doing.

Sometimes it is manageable - I can now allow myself time to cut-back when the 'flare' begins and can rest to accommodate.

Sometimes I can plan for the over-exertion and accommodate it at the time by cutting back on other activities or doing things in advance to save me doing them at the time e.g. having meals ready.

Sometimes the PEM doesn't seem to hit, and I am surprised, only to find it hits the following day, or abnormally affects my ability to sleep. And sometimes I get away with it.

So on an individual level I think it is very hard to define, let alone to test for with a definition that might seek to better determine sub-sets.

Maybe specific and objective tests will help to better determine what PEM is and how badly is affects individuals.

And maybe they will one day determine that e.g. the muscle problems are in fact remedied with a drug, that negates the symptoms generally and removes this aspect from any 'flare' following over-exertion.

Still. It's all interesting stuff. Thanks Bob :)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
By total coincidence, I am populating my local ME charity website with symptoms, and am using this from the Chief Medical Officers Report submitted by the Independent Working Group on CFS/ME in 2002 AKA Gibson Report (it directly fed into and was used by NICE for their Guideline - indeed they took their text from it in parts):

Anyway, I thought it rather good and best exemplifies my own experience of PEM:

Characteristic features of CFS/ME

Perhaps the prime indicator of the condition is the way in which symptoms behave after activity is increased beyond what the patient can tolerate. Such activity, whether physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day, or even later.

This is followed by a recovery period, which again may last for days or even weeks. In some instances, the patient can sustain a level of activity for some time, but a cumulative impact is seen, with a setback after several weeks or more. The amount of activity that provokes increased symptoms is related to the severity of the disorder, and in some individuals is very modest.

Delayed fatigue, postexertional malaise, or increase in other symptoms after activity can be helpful to make a diagnosis. However, the consequent variability in functional disability can make adaptation to the illness very difficult for the patient, and can be confusing to those around the patient or who assess them.

Page 37: http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf

Of course it still leaves the question - is this the 'prime indicator' of ME or CFS/ME or CFS? Some in the recent IOM conference - indeed the majority - would seem to favour it being the prime indicator of Myalgic Encephalomyelitis... and maybe it is - but I think proof of distinction is still required and that will only come with more research...
 
Last edited:
Messages
1,446
Firestorrm: "and am using this from the Chief Medical Officers Report submitted by the Independent Working Group on CFS/ME in 2002 AKA Gibson Report"

.

Errr??? ..The CMO's WG Report (2002) was the work of the Chief Medical Officer's Working Group which sat from 1998-2002. The CMO's WG Report was written and published in 2002, way before the CCC was published, or even known about in Britain.


The Gibson Inquiry (2006), was an unfunded Inquiry of no status (ie not a high level Inquiry, not a Select Committee, not even at the low level of an APPG Inquiry) with Parliamentarians on the Committee for a few months in 2006 (ie after the CCC). The Gibson Inquiry was very controversial in its choice of committee members (Lord Turnburg and Baroness Cumberlage), and that not all the evidence sent in was actually read by all members of the committee (amounts were found stuffed into a cupboard), and for the committee's eventual report with contradictory/controversial statements, particularly about children with ME.


What the Gibson Inquiry DID conclude and recommend was a much higher level Inquiry into the vested interests, interests in the Insurance industry, of certain Psychiatrists who have been influential in the UK ME policy.



Few people in Britain give the NICE Guidelines much enthusiasm, all but two of the charities and the majority of local ME Groups, formally concluded it was Unfit for Purpose.

.

The CCC supercedes the diagnostic guidelines part of NICE.

.
 
Last edited:

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@Wildcat Thanks I got confused and have corrected. It wasn't the Gibson Group report, it was the report that presented patient/expert evidence to the Gibson committee i.e. it was the result of the Independent Working Group into ME/CFS. It is still a description of PEM that best meets what I consider PEM to be - which was my reason for posting it. And even better than CCC in my humble opinion.
 
Messages
1,446
.
Firestorrm.
.
The CMO's Working Group was the Working Group of the Chief Medical Officer of the Department of Health , ie part of government, 1998-2002.


The Gibson Inquiry (2006) was labelled independent because it was independent of government (still parliamentarians, but not part of government, as the CMO is), but a Group/Report of no status.


Are you quoting from the CMO's Report or the Gibson Report? Its pretty difficult to confuse them due to the date of each of them, due to the style of writing, and the structure of the reports, the makeup of the Groups, and the circumstances surrounding each of them.


One of the reasons that NICE was deemed Unfit for purpose by so many groups/charities is the NICE recommendation of GET for moderately ill patients, when so many of the 25% Group (severely/very severely ill) were Not severely/very severely sick, bedbound, tubefed etc, before GET.
They were moderately ill before GET.

.

Its also difficult to see why any previous UK Report should be preferable to the CCC/ICC as now urgently recommended by 50 plus world ME experts. We sure have benefitted from great policies in Britain (NOT).



Am Sure that many US ME patients would love to come to Britain and experience our ME policies. Well, no, I'm sure they wouldn't.

.


.
 
Last edited:

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@Wildcat Why not click on the link I provided? The Report is called:

A Report of the CFS/ME Working Group

Report to the Chief Medical Officer of an Independent Working Group

It was established in 1998 and the Report was presented in 2002. Allen Hutchinson was the Chairman.

On the 16 July 1998, at a scientific briefing to the press at the Royal College of Physicians, the then Chief Medical Officer Sir Kenneth Calman said:

“I recognise chronic fatigue syndrome is a real entity. It is distressing, debilitating, and affects a very large number of people. It poses a significant challenge to the medical profession.”

At the briefing, he announced establishment of a Working Group on CFS/ME.

On the 4 November 1998, Sir Kenneth’s successor Professor Liam Donaldson announced the membership of the CFS/ME Working Group.

Professor Donaldson stated in his press release:

“This initiative will provide us with a real opportunity to review the practical care and support for patients, carers, and healthcare professionals alike.”

After an initial exploratory period in which the principal aspects of the brief were examined, evidence and opinions sought from many quarters, and a systematic search of the international evidence on CFS/ME commissioned, the brief of the Working Group’s report was confirmed:

“To review management and practice in the field of CFS/ME with the aim of providing best practice guidance for professionals, patients, and carers to improve the quality of care and treatment for people with CFS/ME, in particular to:
  • develop good clinical practice guidance on the healthcare management of CFS/ME for NHS professionals, using best available evidence;
  •  make recommendations for further research into the care and treatment of people with CFS/ME;
  •  identify areas which might require further work and make recommendations to CMO.”

Having spent some time over the years reading the NICE Guideline, I can state that there are parts of it that are quotes taken from this report. The report itself contains a lot of patient comment and concerns. As I said, it is only a shame - in my own mind - that NICE did not take on board more from this report. I am sure there are 'better' sources but in the example above and for the purposes of this thread: I thought the description of Post Exertional Malaise was pretty damned accurate for me.
 
Messages
1,446
.

NICE was almost universally condemned by patient local groups and charities.



The NICE Guideline, like the CMO’s WG Report, gave the patients a few crumbs, whilst maintaining the Chronic Fatigue construct, maintaining the construct of ‘Illness beliefs’, and recommending only two ‘treatments’ (CBT/GET). The CMO Report advised limiting investigations (testing), for example. So its no surprise that the Newcastle Research Group uncovered a 40-50% misdiagnosis rate, ie patients who were wrongly diagnosed with ‘CFS’ by the Oxford criteria and later according to the NICE Guidelines . ..


The CMO Report recommended that GET and CBT are the "most promising treatments". The Report emphasised the psychiatric point of view with the inclusion of Illness Beliefs ie. if you believe that you have a physical illness you won’t get better.



Those who made official Responses to the NICE last draft, and those who were too ill to do so, were not impressed with the NICE final published Guideline. There were some very long and substantial Responses to NICE from charities, local groups and individuals, and many shorter Responses from patients who could only write a little. But precious little evidence of them in the final NICE Guideline.



Amongst the problems of the NICE Guidelines were that its Guideline Development Group consisted of Non ME experts, and its reliance on the York Systematic Review of research. The much discussed and criticised York Review reviewed Professor Wessely’s Database of Research, and Papers on ‘GET and CFS/ME’ but did not review Papers on ‘Exercise and CFS/ME’. So, the adverse reactions to exercise were not explored, as research and other evidence were not included in the York Review.



Of the three patient Representatives on the NICE Group, Tania Harrison (of the charity BRAME) resigned in protest and stated that she could not in all conscience put her name to the Guideline.





~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





Links to all the Charity and Patient Group and individual Patient and Carer responses to NICE are linked from this page:


http://www.investinme.org/iime campaigning-nice-guidelines iime response.htm


NICE Documents:

The official page for the NICE Guidelines on CFS/ME.

Click here

Comments Made by Registered Stakeholders (including many of Invest in ME's responses), and responses from the NICE Guideline Development Group

Click here

Dr Ian Gibson MP's Witness Statement to the NICE Guidelines

Click here

NICE Review of Guidelines - Guideline Review Consultation Comments Table - 2011
PDF
(you have to link to the IIME page to access this PDF)


.
..
.
PDF
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
ProHealth published the article earlier: http://www.prohealth.com/library/showarticle.cfm?libid=18642
Editor's Comment:

This is a highly technical study which may prove challenging for a lay audience. However, the implications are profound.This research group has applied a computer algorithm used for data mining and clustering in order to sort symptoms of ME/CFS by frequency and severity.

The method used to gather information was the DePaul Symptom Questionnaire (DSQ), developed by Leonard Jason.The study found that 11 symptoms relating to fatigue, post-exertional malaise, sleep dysfunction, neurocognitive problems, and general pain were highly predictive of ME/CFS.

"This indicates that fatigue, post-exertional malaise, and neurocognitive disorders are the most predictive symptom categories of CFS," concluded the authors. "As such, a CFS case definition should place particular emphasis on these factors."

What is most significant about this study is that not only was the application of the algorithm to the DSQ more accurate as a diagnostic tool than any existing case definition, it can be used by any researcher to identify a patient cohort.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
ProHealth published the article earlier: http://www.prohealth.com/library/showarticle.cfm?libid=18642
What is most significant about this study is that not only was the application of the algorithm to the DSQ more accurate as a diagnostic tool than any existing case definition
These are the accuracy figures for Fukuda, CCC and ICC, based on the methodology used by Watson et al. (I'm not certain but these results may be based on the relevant questions included in the DSQ rather than on a diagnosis directly using the diagnostic criteria themselves.) (I'm not aware of any other accuracy figures for Fukuda, CCC & ICC by other researchers, but it would be interesting to compare such figures with this study, and with Jason's other similar studies that we've been discussing.) ...

Table III
Table III.PNG
 
Last edited: