The P2P Draft report is out

[biophile]

[EDIT: responding to this post by Sasha]

http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-19#post-538147

1. The cost to the US economy isn't $1bn, it's around 20 times that (we have references).

2. There needs to be a call for funds commensurate with that economic burden that is on the same scale as funding for a disease of comparable severity (MS) (we have figures).

3. It's great that the Oxford criteria should be retired.

Good stuff.

4. CBT and GET: there isn't evidence of modest benefit, and PACE should be rejected - it's based on the Oxford criteria and heavily flawed.

5. GET is harmful - references to 'fear of harm' should be removed.

6. Further BPS research is positively not wanted by patients, including more research on CBT.

Rehabilitative CBT/GET is like a spintop which only remains upright on the table because of ongoing spin. It is good that the IOM/P2P as newcomers saw through some of the spin and are openly questioning whether it is actually rehabilitative.

I think coping-style psychotherapies and activity management in the form of pacing do need more research. These could be researched further without the patronizing (mis)guidance and presumptions we get from rehabilitative therapies e.g. CBT. Rehabilitative GET is another house of cards that is usually ineffectual and often dangerous in the real world outside clinical trials which either set the bar for harm pretty high (much higher than improvement) or don't even bother to measure individual adverse effects (preferring group average scores or dropouts instead).

Proponents should finally present evidence that CBT/GET are actually rehabilitating objectively or stop presenting it as such. If there is any useful component to it which helps a fraction of loosely defined cases, then it is their responsibility to find out what that component is and who these patients are. Stop generalizing to the maximum number of patients to find only a few that benefit ie about 1 in 7 at best before considering the minimal thresholds used, selection or recruitment bias, response or reporting biases, the gap between clinical trials and clinical practice, and the lack of improvements to objective outcomes.

Nonblinded trials which encourage the active group to think the treatment they receive is safe and powerful at reversing their pathophysiology are simply not very high quality no matter how many spin doctors you have, and again, it is good to see that the IOM/P2P have acknowledged some of these blatantly obvious problems.

I also think limited BPS research can be OK if it is methodologically sound, not ideologically based and/or spun, and not at the expense of more important biomedical research. Unfortunately this is almost never the case. Proper research in this area would help to debunk the poor quality conclusions we have had to endure so far, and may find something actually useful.

With respect to PEM, PACE claim that CBT/GET helps PEM because less patients reported PEM after CBT/GET. Their measurement of PEM is however suspect (CDC PEM is pretty vague compared to ICC/CCC PENE and they did not use the CDC criteria properly anyway), and the groups reporting less PEM were told that PEM doesn't really exist in the same manner which patients think it does. CBT/GET has never been conducted on a CCC or ICC cohort, let alone using actometers on such a cohort. There are ethical concerns with conducting such studies and I especially can't bring myself to promote further GET trials even if properly conducted. I would certainly find the results interesting whatever the outcome but I just can't willingly recommend fellow patients go into a battle which seems pointless and potentially dangerous.

7. We need treatment specialists, not random 'physicians'.

8. We positively don't want research on bizarre and useless complementary therapies such as homoeopathy, mind-body medicine and 'multimodal' ('spiritual') therapies.

Yeah. I cringe at the idea of being greeted by another random ignorant (but usually well meaning) physician who grins like a village idiot after reading about CBT/GET or alternative medicine and talks about my supposedly-optimistic prognosis.

There was more stuff to praise than I've listed, which I want to add in.

Good start anyway.

 

[biophile]

[lots of posts by others, complaining about PACE et al]

Routine potential COI (future funding, royalties/consultancy, reputation stake in controversy they fuelled)? Check!

Dubious and radical changes to trial end-points after the trial is over and/or after seeing trial data? Check!

Post hoc revisions having the effect of greatly inflating the reported efficacy of their pet therapies? Check!

Misleading claims about the strength of the criteria used and the nature of the results? Check!

A series of factual errors, flaws, or miscalculations, which question their competence? Check!

Falsely framing reasonable letters to the editor (etc) as unscientific personal attacks? Check!

Complaining that requests for further important information about the trial are "harassment"? Check!

Strawmanning the motivations behind criticism of the pseudo-untouchable PACE Trial? Check!

Wouldn't there be an uproar if this was a drug company testing a controversial drug they developed which lots of patients complained was useless or made them worse? But of course, when it's PACE or its supporters, well, how could the people involved in the world's greatest and highest quality study ever conducted in the history of ME/CFS do anything wrong?

Why are people apparently spinning and defending the indefensible, such as the lowering the recovery thresholds to below that of entry criteria, and then lashing out at patients who take issue with it? I think Jonathan Edwards and others already answered this, but it also doesn't hurt to have the networking of the British establishment on your side for self-promotion. It was also disappointing reading about Robert Winston's behaviour in his own profession and his opinions about ME/CFS.

 

[Ren]

I've only read here and there on this thread, and it's a bit too long for me to tackle (now at least). That said, I just wanted to share a couple of thoughts associated with post 461 above.

Re statement 1 - "cost to the US economy..." I see that this statement is related to the economy, but has anyone mentioned that when reporting the number of people affected (prevalence?) that these figures should include the world estimate as well? The 17 million number, as well as the 1 million US number. To my understanding, the report only uses the 1 million number.

If I remember correctly though, the previous P2P draft report on opioids and chronic pain includes info for the number of people affected in the US and the number of people affected worldwide. So if other P2P reports have done this - especially this most recent report - then I think it's all the more acceptable for this info (world prevalence) to be included in the ME/CFS P2P report as well.

Also, shouldn't they say which definition these prevalence rates are based on?

And regarding statement 2 above - "...funds commensurate with economic burden that is on the same scale as..." - I just wanted to add that I've often seen the phrasing - commensurate with illness burden - too. Maybe the illness burden term also captures populations outside the usual working age years? I don't know. It's subtle, but just thought I'd mention it should it make a difference.

 

[biophile]

New Era In Creating a Chronic Fatigue Syndrome Definition Opens

By Cort Johnson on December 25, 2014

http://www.cortjohnson.org/blog/2014/12/25/new-era-chronic-fatigue-syndrome-definition

The Jason et al study mentioned in the blog has also been previously discussed here:

http://forums.phoenixrising.me/inde...efinition-for-cfs-me-leonard-jason-2013.27006

 

[GracieJ]

Still digesting the report, let alone all the comments. Wow.

My first reaction to the draft was positive relief. Political wheels turn slow, and this is 30 years late coming and most likely will be twisted inside out, upside down, and every other possible contortion before it becomes a working, mainstream understanding worth anything. But... it is a breath of fresh air, so different from the usual quick dismissals we see, so I feel like it is a marker for hope and a good development.

Originally cursed by fibromyalgia for the first several years of this journey before a round with mono kicked off the ME side in full, I have continued to follow developments, however casually.

Three stories from there, just to think about.

On an FM forum several years ago, I would encourage fellow members to look closely at the criteria with their doctors, and in cases where they had all the symptoms except the tender points, to expore the possibility of its still being FMS. I had that atypical presentation and was not properly diagnosed for a long time. It became such a drag, as the forum monitors would then corner me with the "official" definition of FMS which "HAS" to include the tender points, and I was "encouraged" to not share those ideas.

Fast forward to 2010. The official criteria, now better developed after years of use and experience, do not include the tender points at all.

A client came into the clinic one day last summer for a massage, and her medical profile was a long one, including a doctor's note okaying medical massage. In our conversation, she mentioned that her rheumatologist had also diagnosed her with fibromyalgia, based on one symptom - the tender points. She had no other fibro symptoms, and refused to take Lyrica. The doctor is furious at her for not taking her advice and complying with treatment.

These things happen with any new disease as its profile is being hammered out in the trenches.

Will ME/CFS be fully defined and properly treated by any doctor encountering it within my lifetime? Maybe, maybe not. There will always be misconceptions. I am one who is not holding my breath, but I do truly believe we are seeing a significant and welcome paradigm shift in the struggle.

 

[Anne]

I certainly agree that PACE seems to have altered the healthcare delivery programme very widely. But there may be an irony here again. Having an approved treatment has allowed ME/CFS specialists to set up ME/CFS clinics and employ staff. If those staff see themselves purely as CBT or GET deliverers, which is the main worry, then that may not be good, but my impression is that at least some of these staff have enough common sense to be able to provide patients at least with some ungoing support in terms of recognising the severity of their illness and advising on practicalities based on experience with treating others. So it may not be all bad.

The experience from the Scandinavian development is the opposite: it's in fact better to have no ME/CFS clinics than bad ME/CFS clinics. It's much easier to start from scratch than to try to turn things around once some sort of ME/CFS care has been established. Once the Rehab/Multimodal/CBT-exercise people become invested in ME/CFS it's almost impossible to get them to let go of the idea that their particular profession (psycholgy, physiotherapy, rehab, etc) holds the key to ME/CFS, and it's hard to get the politicians, CMOs, civil servants etc to change direction and establish proper biomedical care.

In fact, I tend to advise patients in the many counties in Sweden (our health care system is organised regionally) which do not have any ME/CFS care to wait rather than push for something that might end up being an ME/CFS clinic focused on Rehab/CBT/exercise. I think they will probably be better off biding their time until we have more biomedical research data (such as the Norwegian and the UK Rituximab trials) and then go ahead and advocate for specialist care based on a biomedical model.

Incredibly important to get it right from the start. It's almost impossible to change direction once a clinic is up. - That's our experience.

 

[Nielk]

New Era In Creating a Chronic Fatigue Syndrome Definition Opens

By Cort Johnson on December 25, 2014

http://www.cortjohnson.org/blog/2014/12/25/new-era-chronic-fatigue-syndrome-definition

The Jason et al study mentioned in the blog has also been previously discussed here:

http://forums.phoenixrising.me/inde...efinition-for-cfs-me-leonard-jason-2013.27006

Cort states:

Earlier this year fifty advocates and many in the ME/CFS signed a petition requesting the Dept. of Health and Human Services (DHHS) accept the Canadian Consensus Criteria..

my bold

It was not fifty advocates. It was 50 medical clinicians and researchers who had extensive experiense treating and studying the disease. In addition to this expert letter, In addition, over 170 advocates signed a letter supporting the letter by the experts.

It is interesting to note that Dr. Leonard Jason was one of the 50 signatories of the letter to the HHS, urging them to adopt the CCC now.

 

[Ember]

It is interesting to note that Dr. Leonard Jason was one of the 50 signatories of the letter to the HHS, urging them to adopt the CCC now.

According to Cort, Dr. Jason is working on a research definition that would require, at a minimum:

• fatigue or extreme tiredness,

• inability to focus on more than one thing at a time, and

• experiencing a dead or heavy feeling after starting to exercise.

To explain its dubious face validity, Cort argues that a research definition “may not include some prominent symptoms and may include less prominent symptoms. The makeup of a symptom-based research definition will depend on not on the most recognizable symptoms, but what symptoms are unique to it relative to those found in other disorders.” He then claims, however, that these three symptoms differentiate between ME/CFS patients and healthy controls: “Jason’s data mining analysis indicated, however, that so long as you require that a symptom be present at least half the time and have moderate severity, just three symptoms are needed to correctly differentiate almost all the ME/CFS controls from the healthy controls.”

In his P2P presentation, Dr. Jason spoke of a four-factor solution: cognitive dysfunction, PEM and sleep, along with "a combined factor of neuroendocrine, autonomic, and immune areas [that] involves symptoms that occur at lower rates than the more core domains that might be better thought of as subtypes.”

Responding to Cort's article:

• the CCC is a clinical definition, created by clinicians (not by clinicians and researchers);

• the ICC requires PENE (not PEM), along with symptoms from three other criterial clusters;

• both the CCC and the ICC exclude patients with primary psychiatric disorders;

• both the CCC and the ICC require significant overall impairment;

• the reported study uses exclusively (according to Simon) the DePaul Symptom Questionnaire (developed prior to the publication of the ICC), not the CCC or the ICC;

• the DePaul Symptom Questionnaire is not an established gold standard.

Dr. Jason would like to do as well as the CCC or the ICC using fewer variables, but he hasn't yet proven his case. With respect to the ICC, he has cast himself in the role of the uninvited fairy, offering a curse at the christening. Cort prefers to cast a different light on this study though, posting his article on Christmas Day to signify a wondrous birth.

 

[Ember]

What I particularly need to read are examples from all of you of responses to the P2P draft summary. I can try to do it myself, but expect that more... comprehensive comments on various lines or sections could be put together by this group. Suggestions would be most welcome!

With its statement, “We believe that ME/CFS is a distinct disease,” the Draft Report provides NIH with a lumper's manifesto. The Evidence Report takes the following position on ME and CFS:

Uncertainty persists regarding the etiology of ME/CFS, whether it is a pathologically discrete syndrome,3,7 whether ME should be considered a subset of CFS or its own distinct disease,5 or whether the symptom set is nonspecific and shared by other disease entities....

The case definitions overlap but vary greatly in their symptom set, leading to concern that they do not all represent the same disease or identify the same cohort of patients.7 The international ME consensus panel of experts recommends that patients meeting the International Consensus Criteria (ICC) be given the name ME, and that those meeting the criteria for CFS but not the ICC for ME be given the name CFS.7 For this report we have considered all case definitions, recognizing that no case definition has been accepted as a reliable reference standard (“gold standard”) and that unresolved issues persist.

But despite never having diagnosed a single ME or CFS patient, the Panel presumes to resolve the issue in favour of ME=CFS. The Draft Report

• insists that the ME/CFS community agree on a single case definition (even if it is not perfect),

• recommends CBT/GET treatments, without mentioning (as does the Evidence Report) that ME patients weren't included in the PACE trial, and

• omits any reference to further studying the two-day exercise test.

The Draft Report needs to be protested, not just critiqued line by line or section by section. It denies that ME exists.

 

[Sing]

Regarding Dr. Jason and the DePaul Questionnaire:

Having patient selection for research purposes based on a simplistic, vague, general set of questions for which people will answer according to their interpretations, which may be widely different than their intended interpretations, is a very serious mistake in my view. No multiple choice or pick a number between one and four questionnaire could ever perform as an sufficiently accurate diagnostic tool.

I understand the temptation for using a questionnaire because they can be subjected to easy comparisons and statistical analysis, but that doesn't make this form accurate or scientific. I consider this prospect as inadequate, misleading and potentially harmful.

Dr. Jason who has been so helpful communicating about the problems with 8 different definitions, has jumped to a quick and error-prone solution with his DePaul Questionnaire.

I ask his group to post it online for the critique of patients and expert clinicians.

 

[Bob]

A few comments about Lenny Jason's research:

Cort Johnson's article does not necessarily reflect Lenny Jason's opinions. I think Cort may have written about his own interpretation of Jason's research. There's no suggestion that the blog is based on an interview with Lenny. So we should be careful about thinking that Cort's blog is reflective of Lenny Jason's opinions.

Jason has done a lot of research in this area, and I find it all very interesting. He's even discredited Fukuda. The research that Cort discusses, in his blog, is not new and we've discussed it at length in other threads. And it seems more nuanced, and a work-in-progress than Cort's blog suggests.

I've been following Lenny's research over a period of time, and I believe that he's a thorough scientist who wouldn't attempt to thrust anything into the ME community without thoroughly testing it first, in large scale studies. Actually I don't believe he'd try to thrust anything onto the community, period. He seems like a very decent and collaborative person to me.

I haven't heard him comment much on his own research findings, and I've never heard him comment on these sort of outcomes (that Cort discusses) as if they were certainties. He tends to continue refining and developing his research. Each paper is part of a larger body of work. I expect he's seeking to further refine his research, related to the DePaul questionnaire, on much larger cohorts. And I expect he would want to test his outcomes on a very large cohort before deciding it was properly validated, and applicable to the whole ME/CFS community.

There's a couple of things about Jason's research that I still don't understand, despite reading many of his papers. I don't know if he's used the DePaul questionnaire to define CCC patients, and I don't know how he defines a generalized ME/CFS patient. (He's discredited Fukuda, and he isn't keen on CCC. So how does he define a generalised ME or CFS patient when testing the DePaul questionnaire?) But I'm going way off-topic and I should ask this on another thread.

 

[Bob]

With its statement, “We believe that ME/CFS is a distinct disease,” the Draft Report provides NIH with a lumper's manifesto.

I think that's an interesting point. The document does allow for a certain degree of inclusivity. However, they don't advocate for broad inclusivity: they do include the clear statement that ME/CFS should not include simple chronic fatigue (i.e. Oxford) and they clearly state that Fukuda isn't satisfactory and needs to be replaced. They also say that ME/CFS isn't psychiatric or psychological in nature. They also talk extensively about the biomedical nature of the illness. And they emphasise various fundamental symptoms other than fatigue.

So, they don't insist that PEM is a critical aspect of "ME/CFS", but there is some attempt to separate ME/CFS from simple fatigue and fatigue with a psychological basis. So, I don't think it's as clear-cut as your comments might suggest.

I can see that it isn't satisfactory for anyone who demands nothing less than the CCC or ICC be implemented, immediately. But they do say that a new consensus process be put in place to come up with a universally accepted set of criteria. The outcome would have to have the broad agreement of our community if it was to have any validity.

 

[Ember]

Notice too these quotations from the Draft Report:

“Focusing on fatigue alone may identify many ME/CFS cases. However, this symptom taken in isolation fails to capture the essence of this complex condition."

“Is ME/CFS a spectrum disease?”

“The subjective nature of ME/CFS, associated stigma, and the lack of a standard case definition has stifled progress."

 

[Sing]

@Bob re. post 471, Thank you for your quick response as I agree it would be better to discuss the subject of the DePaul questionnaire and Dr. Jason's ongoing research in another place. We've got enough on our plates here to come up with responses to the draft report. I went off topic.

 

[Bob]

@Bob re. post 471, Thank you for your quick response as I agree it would be better to discuss the subject of the DePaul questionnaire and Dr. Jason's ongoing research in another place. We've got enough on our plates here to come up with responses to the draft report. I went off topic.

Yes, I think that Cort's blog is a bit off-topic. But i wasn't aiming my comments at anyone specifically. Just a general observation.

 

[taniaaust1]

I was also a bit flummoxed when I asked Julia Newton what she thought of the Lights' work and she said she had never heard of anyone called Light.

Im not at all surprised to hear something like this.

This is why I think there needs to be in ME/CFS advocacy, all the ME/CFS studies on the like systems or connected ones put together into some database for people and researchers to access, as not many have any clue of previous research which could be linked to their own or supporting it. eg all ME/CFS research related to hormones, genetics, cardiology, immune system or whatever, gathered in its fields and make sure the researchers know about it.

There is so much research out there but noone is pulling it together.

It would be helpful if ME/CFS advocates could make researchers in certain aware of study area of ME/CFS research in those areas too (to bring new researchers in).

What would be great would be someone could gather all the research together, sort it all (what studies goes with what) ... add to each research study done a section with the pros and cons of that study (any problems with it eg patient group etc etc) and put it into an ME/CFS research online manual to be accessable to all. It would be good if each study was clearly marked too with various symbols according to what ME/CFS definition was used for the study.

the whole lot is complete chaos currently and needs a group working to sort out the whole mess and make the study info more readily available and easy for researchers to get their hands onto and know about.

 

[Sing]

Dr. Komaroff at Harvard is one researcher/clinician/professor who keeps track of the research and is able to present it in a clear, organized fashion. He is conservative in that he tries to stick with the evidence before coming to premature conclusions, but at the same time, he is skilled at showing which ways the best research is trending.

I agree with you, Tania, that a lot of the researchers seem to lack knowledge of the field as a whole and I always wish that they would learn it. Every time there is a symposium or big conference of our doctors and researchers, I am grateful.

 

[Ember]

Here's a possible Trojan horse from the Draft Report: “A clear case definition with validated diagnostic tools is required before studies can be conducted.” If validated diagnostic tools are required before studies can be conducted, are we then just going to have to wait?

Is this a nod to Dr. Unger's work with the PROMIS questionnaires or to Dr. Jason's DSQ?
According to Jason et al. (2010):

The DePaul Symptom Questionnaire is a useful screening tool to assess for ME/CFS according to the Revised Canadian ME/CFS case definition, but it does not provide the full picture of a patient’s symptomatology. Thus, for research purposes, we propose some additional measures that could be administered to obtain more comprehensive data on symptomatology. For fatigue, the Fatigue Severity Scale (FSS) (Krupp et al., 1989) is a measure of the behavioral consequences of fatigue. In a study by Jason et al. (2010e), the FSS was found to have a better ability to detect cases and non-cases than the MFI (Smets et al., 1995), the Fatigue Scale (Chalder et al., 1993) and the Profile of Fatigue-Related Symptoms (Ray et al., 1992). For sleep disturbances, we suggest the Pittsburgh Sleep Quality Index (Buysse, 1989) for measuring sleep disruptions and sleep quality. Finally, pain symptoms can be assessed with the McGill Pain Questionnaire, a well-validated measure (Melzack, 1975).

Are validated diagnostic tools required for other diseases before studies can be conducted?

 

[biophile]

I have only skimmed through the study Cort mentions but I have some doubts about the health of the healthy controls, but this may simply just be an artifact from how this study was conducted and how case definitions are usually applied in practice.

Control: Individuals in the SolveCFS BioBank sample without a diagnosis of CFS or ME/CFS [...] Control participants were recruited who were in generally good physical and mental health and did not have a substance use disorder or any disorder that causes immunosuppression.

In fact, using this threshold, 33.7% of controls would meet the Fukuda CFS symptom requirement of having four of the eight specified symptoms, while only 4.7% of controls would meet this requirement if the frequency and severity threshold were raised to scores of 2 or higher. Similarly, 20.7% of controls would meet the seven symptom requirements of the Canadian ME/CFS criteria [10] when using a minimum frequency and severity threshold of 1, while just 3.7% of controls would meet these symptom requirements if the minimum threshold were raised to 2. The adjusted ME-ICC [17] results in the same trend: 14.6% of controls would meet the eight symptom requirements using a minimum threshold of 1, while 3.7% of controls would meet the requirements when employing the more stringent threshold of 2.

I get the impression that the high rates of diagnosis in the healthy controls, based on presence of symptoms only without accounting for severity of symptoms, are misleading because these diagnoses require (albeit arbitrarily) that overall the symptoms have a significant impact on function, which a presence based approach does not capture.

I have trouble believing that 33.7% / 20.7% / 14.6% of healthy controls would meet Fukuda / CCC / ICC respectively as they are usually applied in the clinic. I certainly have trouble believing that 14.6% of "healthy controls" would meet the ICC symptom criteria *and* its requirement of a 50% reduction in function due to these symptoms (note that the 50% requirement is regarded as "mild" in the ME-ICC but "moderate" in the ME-ICC primer for physicians).

I'm also assuming here in this particular study (I could be wrong but I hope not) that "meet the eight symptom requirements" for the ICC is more than merely reporting 8 of any symptoms at all but also meets the specific category requirements of the ICC i.e. must meet criteria for PENE, plus at least 1 symptom from 3 symptom categories of neurological impairments, plus at least 1 symptom from 3 symptom categories of immune/gastro-intestinal/genitourinary impairments, plus at least 1 symptom of energy metabolism / ion transport impairments? If not then it is not the ICC.

Also, does the study by Jason et al take into account the duration of symptoms? Participants were asked about 54 symptoms "over the past six months on a five-point Likert scale" for frequency and severity. I'm sure that a significant proportion of healthy controls also experience transient illnesses which have similar symptoms which meet the criteria for "a little of the time" (or more often than that) and "mild" (or more severe than that). Jason et al do point out somewhere that compared to healthy controls, patients experience different types of fatigue and more severe symptoms.

Looking at the figures in the paper I'm not entirely convinced that PENE has been captured properly, and Jason et al do concede that "symptoms were not asked about in relation to activity" (some specific symptoms are activity related so they probably mean more in general) and that they used an earlier version of the DSQ which does not capture 2 symptoms in the ICC ("susceptibility to viral infections with prolonged recovery periods" and "intolerance of extremes of temperature").

I generally support a statistical approach to refining case definitions but there is a lot of work to do, and messing it up will have serious consequences for decades, so patients have a right to be cautious about any alleged developments.

Regarding Cort's mention of the study which reported higher rates of psychiatric diagnoses in ICC. I am not convinced this is as big of a problem as some have made it out to be and I don't think the issue is settled. I don't really feel well enough to summarize my stance on that right now, but I posted on it at the relevant thread when the paper first came out:

http://forums.phoenixrising.me/inde...international-consensus-criteria.22967/page-4

 

[Jonathan Edwards]

I think it is useful that all this discussion of criteria is going on and it looks as if Dr Jason has done some serious thinking about this - especially the difficulties. As I said before, I am doubtful that one set of criteria is what we are looking for but checking out how the various options shape up in reality is important. One thing I wonder about is this idea of mismatch. It seems to me that almost any symptom of ME might be ticked on a questionnaire but what makes ME different is a sort of mismatch to expectations. PEM is a sort of mismatch of unexpected symptoms after effort maybe. Brain fog is wanting to think but not being able to - whereas in most psychiatric conditions that mismatch is not apparent - at least not in the same way. A prominent feature of psychiatric conditions is lack of insight whereas in ME insight seems to be very sharp. Maybe there might be a version of Jason's idea of 'more than half the time' that is 'at the wrong time' or 'inappropriate for the circumstances'. I can't quite work it out but the fact that Jason can gauge the sensitivity and specificity of criteria suggests that he can identify something about the symptomatology that does not come up on a simple yes no question.