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Posted this in a usually ME hostile "Doctors" only forum

Dr Who

has it...
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Stornoway
.... been a while since I gave them a poke. Have always regretted it. Just wanted to see if things are changing in my profession. Posted in the......


Nutrition Forum

A Philosophical Observation on the ICC Criteria for diagnosing ME

A Philosophical Observation on the ICC Criteria for diagnosing ME and its similarities with the Symptom-scape of multiple nutritional deficiencies.
Sometime this month Dr Ron Davis of Stanford University, of Human Genome Project fame and standing, is expected to present his next instalment of insight, drawn from computationally dissected and analysed mega-data from hundreds of different clinical tests performed on each of hundreds of individuals deemed to be suffering from pure, unadulterated ME of a severe degree. He has hinted that he believes he has identified a ‘metabolic trap’ of such a fundamental nature that there may even be a simple, one off (involving several days therapy as an inpatient) treatment to rescue and restore sufferers to ‘normal’. He has also hinted that the metabolism involved is so fundamental that inexpert and/or unmeasured intervention may prove harmful, even fatal, if embarked upon recklessly. This has raised hopes that there may be a set of simple measurements that could be taken to clinically confirm the metabolic dysfunction, and the diagnosis, qualitatively and quantitively, with tailored treatment resulting in not just relief, but cure and prevention! Crucial to this has been the ICC Criteria for sifting out those with co-morbid conditions, physical and mental, and those with less severe illness. The ICC Criteria were designed to improve the quality of research sampling and as such were designed to be highly specific while lacking in sensitivity. They are not designed to be clinically diagnostic but are very useful as a reference clinically and in teaching the more ‘psychiatrically challenged’ clinician that the cult of believing that ME is a psychosomatic disorder with ‘deconditioning’ consequences has really had its day and that if they cling on to the beliefs of this deluded cult, it says far more about them as a person, and as a doctor, than their cult ever did about the patients who were ever diagnosed, or misdiagnosed, with ME.
If we assume that the 5 (compulsory) very specific ways of describing and defining the nature and severity of fatigue, as described in the International Concensus Criteria for defining ME for research purposes, as possibly being met by each vitamin and mineral deficiency that is associated with the symptom of ‘fatigue’ then:-
Symptoms of B3, Niacin (Nicotinic acid and Nicotinamide) deficiency can, on their own, fulfil the ICC research criteria for a diagnosis of severe ME/CFS. Its utilization by transformation into Nicotinamide Adenosyl Dinucleotide (NAD), requiring the incorporation of ribosyl components, is therefore zinc and magnesium dependent and for the production of the adenosyl component is therefore B9 (folates), zinc, magnesium, B2 (riboflavin, (and therefore possibly PQQ)), B12 (Cobalamin) and B6 (Pyridoxine/Pyridoxal-5-phosphate) dependent . Niacin deficiency symptoms secondary to dietary inadequacy (of Niacin and Tryptophan) alone could therefore fulfil the ICC diagnostic criteria. Production of endogenous Niacin (so, strictly speaking not a vitamin) from Tryptophan is Iron (?PQQ), FAD(B2,Zinc,?PQQ) dependent in it’s own right to the metabolic intermediate Quinolinate through the kynurenine pathway and therefore (through the need for the adenosyl component of FAD) doubly B9 (folates), zinc, magnesium, B2 (riboflavin, (and therefore possibly PQQ)), B12 (Cobalamin) and B6 (Pyridoxine/Pyridoxal-5-phosphate) dependent .

B9 (folates) deficiency falls one symptom category short of the 3 of 5 required in Group C impairments (namely lacking “susceptibility to viral infections with prolonged recovery periods, genitourinary symptoms (specified) and chemical, food, medication or odour sensitivities) although B9 deficiency is generally accepted to be associated with immune deficiency with recurrent infection or chronic infection. If this is accepted as equal to the ICC definition of “susceptibility to viral infections with prolonged recovery periods”, then symptoms of B9 deficiency could also fulfil the criteria for the ICC on the definition of ME for research purposes. B6, B12, Zinc and Iron deficiency are all associated with immune deficiency and recurrent infections but would even then still fall short of the ICC criteria by one, in the case of B12 and Zinc, and two in the case of B6 and Iron, symptom category of the 3 of 5 required in Group C impairments. B6 and Zinc also fail to qualify on the Group D impairments (Energy production/transportation impairments) of the ICC criteria.
It is interesting to note that a combination of Zinc and B2 deficiency symptoms can equate to the “one short” of the criteria in exactly the same way as B9 (folates) and that Zinc deficiency, like B9 (folates), is associated with immune deficiency with recurrent infection or chronic infection and so, if co-existing with B2 deficiency, might be considered to be capable of fulfilling the ICC criteria, like B9 (folates).
The ICC criteria allows for a definition of “Atypical ME” if the individual falls short of up to no more than 2 symptom categories, adding that ME without pain or sleep problems is rare. Individually, with a full set of symptoms, B12 (Cobalamin), Magnesium, B1 (Thiamine), Carnitine, Copper, B5 (Pantothenate), Mobydenum, Selenium and Vitamin E deficiency could all meet the criteria for ICC “Atypical ME”. So could an excess of Vit D (Calcitriol).
This last example of a solo explanation for a form of ICC positive diagnosis of ‘Atypical ME’ is of some interest. It has been hypothesised that thyroid hormone resistance, secondary to raised Vit D(Calcitriol)/proVit D(Calcidiol) ratios, may account for much of ME symptomatology. In chronic inflammation provit D (Calcidiol) levels drop [the vitamin D that is measured ‘clinically’] and Vit D (Calcitriol) levels increase way beyond normal [these are not measured clinically] the ‘toxic’ levels of Vit D (Calcitriol) have been suggested to be compensating for pathogen produced vitamin D receptor antagonists. Unfortunately, at these levels, the Vit D (Calcitriol) begins to antagonise/displace T3’s effect on its T3 (alpha, + possibly beta) receptors. If a doctor has measured the provit D (Calcidiol) levels, found them low, and presumed this represents low Vit D levels, rather than the toxic levels, prescribing (pro)Vit D may actually make the symptoms of Vit D toxicity and thyroid hormone resistance worse?
Of the remaining symptoms commonly accepted as being associated with ME/CFS, by such organisations as; the NHS, Open Medical Foundation, ME Association and CFS unravelled(.com), that are not included in the intentionally specific, but not as sensitive ICC criteria, deficiencies of B3, B9, Zinc, B2, B6, Iron, B12 or Magnesium could between them account for 15 of the 28 remaining symptoms, 49 times. The remaining 13 of these 28 symptoms that deficiencies in any of these vitamins and minerals were not associated with were; seeing spots, double vision, loss of speech, loss of swallowing, weight change, muscle wasting, inflammation, allergies, skin test/IgE negative allergies, morning stiffness, alcohol intolerance, cardiac syndrome X and thirst.
At a glance of tabulated symptom lists versus: individual vitamin, mineral, pseudovitamin, essential nutrient and conditionally essential nutrient deficiencies, it would appear that many more pairs, triplets or larger groups of commonly co-existing nutrient deficiencies could ‘blag’ their way into the ICC criteria for a ‘full set’ symptom match for ME/Atypical ME diagnosis.
I do not think that these observations need be perceived as any criticism of the ICC Criteria. Indeed, the assumption in my first paragraph is more philosophical than observational and it must be remembered that the fatigue of ME has been consistently characterised, described and measured objectively for so long, to such a degree and in such a way that no fatigue/lethargy/cognitive decline of nutrient deficiency origin has ever been. However, it does raise questions as to whether, by taking ten steps back and squinting our eyes to blur the picture, that this panoramic ‘symptom-scape’, with key features, could perhaps resemble a familiar picture to those with familiarity with nutrition. Perhaps, such individuals with such a familiarity, might be able to offer insights and observations to those who are now making headway with the metabolic pathogenesis of ME symptoms. Whether any such nutritional deficiencies can be judged primarily due to our modern, agriculturally leeched, industrialised, globalised diet in combination with unnaturally relocated geo-specialised metabolisms and/or secondary to an increase in increased frequency of acute and increased volume of chronic immunological challenge and metabolic/nutritional load on our immune systems is probably well over the horizon of discovery.
In examining nutrition in the context of searching for explanations for the patho-physiology of the symptoms of fatigue/exhaustion and neurological deficits in ME there have already been correlations drawn with similar, recent insights into the patho-physiology of Type 2 DM, Alzheimer’s, Parkinson’s, Multiple Sclerosis, HIV, Congestive Heart Disease, certain cancers, atherosclerosis and many more illnesses begging for faster advancement in understanding and treatment.
 

Dr Who

has it...
Messages
21
Location
Stornoway
Just one anonymous "like" and "thank you for posting". Anybody from here perhaps? The rest (x 3 or 4) as expected so far, sadly. Maybe I'll plant it in Chat General or the Air Your Views to the Press forums there? What do you think?
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
...
In examining nutrition in the context of searching for explanations for the patho-physiology of the symptoms of fatigue/exhaustion and neurological deficits in ME there have already been correlations drawn with similar, recent insights into the patho-physiology of Type 2 DM, Alzheimer’s, Parkinson’s, Multiple Sclerosis, HIV, Congestive Heart Disease, certain cancers, atherosclerosis and many more illnesses begging for faster advancement in understanding and treatment.

Interesting.

You may find the nutrition research uncovered by investigative journalist Nina Teicholz pertinent to your idea:

https://ninateicholz.com/other-works/
 

percyval577

nucleus caudatus et al
Messages
1,302
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Ik waak up
Ron Davis ... unadulterated ME of a severe degree. He has hinted that he believes he has identified a ‘metabolic trap’ of such a fundamental nature that there may even be a simple, one off (involving several days therapy as an inpatient) treatment to rescue and restore sufferers to ‘normal’. He has also hinted that the metabolism involved is so fundamental that inexpert and/or unmeasured intervention may prove harmful, even fatal, if embarked upon recklessly.

This has raised hopes that there may be a set of simple measurements that could be taken to clinically confirm the metabolic dysfunction, and the diagnosis, qualitatively and quantitively, with tailored treatment resulting in not just relief, but cure and prevention! Crucial to this has been the ICC Criteria for sifting out those with co-morbid conditions, physical and mental, and those with less severe illness. The ICC Criteria were designed to improve the quality of research sampling and as such were designed to be highly specific while lacking in sensitivity.

They are not designed to be clinically diagnostic but are very useful as a reference clinically and in teaching the more ‘psychiatrically challenged’ clinician that the cult of believing that ME is a psychosomatic disorder with ‘deconditioning’ consequences has really had its day and that if they cling on to the beliefs of this deluded cult, it says far more about them as a person, and as a doctor, than their cult ever did about the patients who were ever diagnosed, or misdiagnosed, with ME.
Dear Dr.Who, many regards to you and Stornaway, I have been there once!

I figured out what could be called a metabolic trap, but it runs as well through epigentics, I have made threads on it. It works on a more long term for me, and makes, I dare to think, quite a lot of sense. It goes as follows:

...........(shown 4 times).....................................................................................................(shown 1 time)
manganese -> inducible Nitric Oxide Synthase -> Nitric Oxide (<)-> Actetylcholine <- AChE <- sugar/fat
...........................................................(<-------------------------------------------).....................................[via hypothalamus]
........................................................................................................-> all nerves ............................[an influence of the nerves on the immunesystem via hypothalamus is well accepted, it has been promoted firstly by I. Baciu since 1945, to my knowl.]

Downstreams might/should occur al lot of different things which would be specific to different persons and circumstances; genetics and histories.
I don´t know if you have patients who would (like to) fit into a try. I reduce all three nutritions and would think that this would be common - but I don´t know of course.

Yes, the research in the past has been a catastrophy, indirectly for me at least. At some point I could not cope with the idiocy I got back from your colleques.
Your insight is very much appreciated. I was very glad to read, that you have entered our hostiles.
 

anniekim

Senior Member
Messages
779
Location
U.K
They are not designed to be clinically diagnostic but are very useful as a reference clinically

Thanks for writing this on a doctor’s forum. I thought the ICC authors said ICC can be used as both diagnostic and for research, as they know in the history of ME how diagnostic criteria have ended up being used as research criteria and vice versa?
 

Dr Who

has it...
Messages
21
Location
Stornoway
I think the point is that, although someone meeting the criteria for an ICC 'diagnosis' of ME/CFS almost, absolutely has ME/CFS, the spectrum of symptoms produced by this illness is so heterogenous, with one persons symptomatology compared to another's being so variable and with so many sufferers of this illness NOT experiencing enough of the ICC criteria to qualify for an ICC diagnosis of ME/CFS that it was/is important, especially when talking to doctors (who are not often as bright or clever as they, or most other people, think) to stress that many people with ME/CFS will not qualify for an ICC diagnosis while having the disease.

With our history of experience with doctors, the last thing we need is doctors thinking that the, perhaps 80% or more, proportion of people with ME/CFS that do not qualify for an ICC category being told that they had read too much/ not enough on the internet and that they did not have the 'imaginary' illness ME/CFS but a completely different imaginary illness. The ICC criteria do not include every symptom often reported by sufferers. The severity of some of the symptoms in the ICC criteria are quite severe or advanced in some cases, but exclude symptoms of a similar nature of less severity, earlier manifestation.

Some of the symptoms that are quite common among ME/CFS sufferers are also very common with a lot of other illnesses and so, regardless of severity or disability caused, are not included in the ICC criteria. The primary purpose of the ICC criteria is to identify people with severe or advanced ME/CFS (Not all people with ME/CFS) and not get them mixed up with people who may have similar presenting conditions such as people with MS, Severe Depression with somatosization, agitation, anxiety etc., Crohns disease, and any number of individuals with multiple neurological and/or immunological and/or metabolic and/or psychiatric and/or personality disorders who have previously been dismissively or mistakenly misdiagnosed as having ME/CFS and included in studies that have then contaminated the results and mislead following research.

The ICC criteria were designed as a research tool to improve subject sampling in research. They were not designed as a diagnostic tool, for if they were, they would be a very poor one. Someone could have very severe ME/CFS, seriously affecting their quality of life, morbidity and mortality and still not qualify for an ICC criteria diagnosis of ME/CFS. I most certainly did not want any doctor on the forum picking up the wrong idea and taking the ICC criteria to work and telling 80% or more of their patients that this diagnostic test showed that they did not have ME/CFS, must therefore have some other kind of dyscopic, psychological or psychiatric condition.

The ICC criteria, in short, are not very good at identifying everyone with ME/CFS, but if the criteria are fulfilled the individual almost certainly has ME/CFS.
 
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anniekim

Senior Member
Messages
779
Location
U.K
I have looked up the ICC again and as I thought ICC authors write the criteria should be used for diagnostic purposes and research. With research the authors write, ‘ Classifying patients by subgroups to enable the comparison of patients within the diagnosis of ME may be helpful in some studies.”

The ICC say they are for diagnosing mild through to very severe. My mum is mildly affected, I am severe (bedridden) she meets ICC when she overdoes her activity.

Also ICC have provision for atypical ME which is PENE and only five symptoms.
 
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Dr Who

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Hi Anniekim, I think the examples of yourself and your mother illustrate the limitations of the ICC as a diagnostic tool perfectly. I have no doubt that both you and your mother suffer from ME/CFS. However, if a doctor were to use them, and only them, to diagnose your mother after a, say 3 month(?), period of pacing herself well without overdoing her activity, she would be told that the ICC criteria determine that she does not have ME/CFS, because that is how doctors think of tests.

A doctor these days has developed the mistaken faith and belief that, if a test is right "95%" of the time it can be used clinically, so if it is being used clinically it must be right 9 and a half times out of 10. That is with blood tests and the like. Just to be sure, a thorough and cautious doctor may do another test or 2 in case the patient is in the small group that the first test misses, but if these come up negative, then the doctor is usually 100% certain that the tests for the disease are negative. Often this is the sum total of a doctors understanding of diagnostic statistics, unless they are into research or measuring certain trends in certain populations.

While the ICC criteria can be used to diagnose ME/CFS, it would be a very poor diagnostic tool clinically. I believe my first brush with ME/CFS was after a viral infection and accidental trauma with surgery under GA in my late teens with mild symptoms relapsing for a few years. Then again, 5 years later, following an upper respiratory infection, dental surgery and a very exciting time during which I, my wife and son were living under police protection with bounties on our heads but refusing to run and hide, I had a depressive breakdown. Looking back, I now realise that ME/CFS was probably a big part of the physical, sleep and metabolic symptoms being attributed to the depression. I was depressed and struggling with my medical studies because of the above mentioned stresses and a significant degree of unrecognised and undiagnosed high functioning dyslexia. Further episodes of physical and psychological stress coincided with episodes of depression and physical exhaustion throughout my adult working life. Curiously, the mood and thought depressive symptoms were less and less severe, but the exhaustion, pain, breathlessness and immunological symptoms were more and more severe with each bout, until, after a GA to get a piece of me removed, post-op chest infection, causing a strangled epigastric hernia (no surgery) followed immediately by swine flu, I experienced profound exhaustion, muscular pain, cognitive blunting and cold intolerance for many months without the slightest sign of depression (2010). By 2012 I was getting depressed again, because of the physical symptoms and carer fatigue (my wife was/is bed bound with severe ME/CFS and FM), sought assessment and help from a psychiatrist friend and I was misdiagnosed and treated as hypothyroid! It was not until that diagnosis was finally overturned that I pursued a more rational NHS journey to investigate the physical symptoms. I did not receive a diagnosis of ME/CFS until 2016, and of course, was discharged from all further follow-up or investigation. I had been up to 50% bed bound and 95% house-bound with-in 4 weekly periods. I do now meet the ICC criteria for ME/CFS, but probably might only have scraped in as an Atypical ME at the time of my NHS diagnosis.

While the ICC criteria can confidently diagnose a person as having ME/CFS it is very, very poor at diagnosing someone who has ME/CFS. This is not a contradiction. The worse the ME/CFS is, the better at detecting it the ICC is without mistaking another illness for ME/CFS. While the ICC can identify some sufferers of mild to moderate ME/CFS it will not detect most. The less severe the illness, the less likely a sufferer is to meet the ICC criteria. With less than 25% of ME/CFS sufferers being in the Severe category, the vast majority of ME/CFS sufferers would not meet the ICC criteria. In clinical terms, that is not a very useful screening or diagnostic test. In research terms it is extremely useful for weeding out those who are purely depressed, purely parkinsonian, purely psychologically disturbed with psychosomatic overlay, purely socially dysfunctional secondary to anxiety or subsequent secondary gain and a whole host of physical and psychiatric or psychological disorders that can partially mimic less stringent clinical descriptions of ME/CFS. Indeed many doctors just give a diagnosis of ME/CFS to their patients in the belief that it is a more polite and mutually agreeable way of saying to the patient "there is nothing wrong with you except your attitude and/or lack of motivational stamina" (which most doctors think ME/CFS is) and much less troublesome, for them, than a proper psychiatric, psychological or neuropsychological diagnosis.

I recently discovered that a close relative who received a diagnosis of ME around a year ago who, despite having to give up her profession, reducing her physical activity by ~50%, who becomes bed-bound with exhaustion and migraine after several days normal exertion (for her), only last week was seen by a different doctor who decided she ought to have had her thyroid function checked and be screened for Lyme disease. Doctors are lazy, ignorant and (particularly in the UK) under pressures to label patients with diagnoses that create the least amount of work for themselves and the lowest cost to their business/the taxpayer. Diagnosing every heart-sink patient with "cannae get up, cannae do stuff and cannae sleep" symptoms with a "do not know what it is, it is all your fault anyway and the only person that can help you is yourself" diagnosis, commonly perceived by the medical community, in the UK anyway, as "ME", is hardly surprising. As a result, past research into ME was contaminated with these lazy diagnoses. The diagnostic pollution was probably made more concentrated by the fact that genuine sufferers of ME/CFS were less likely to be able to attend clinic or continue with therapies than those with everything to gain from achieving medicalisation of a psychiatric, psychosomatic or secondary gain driven non-physiological illness.

The ICC criteria were an attempt to weed out the non-ME/CFS from the studies and distil the more severe ME/CFS from the mild to moderate. The ICC criteria can be used to diagnose ME/CFS, but should not be used clinically on their own. I am sure that they said that somewhere. If they did not, they should have. No-one would accept a clinical test, on its own, that only detected 25 to 33% of cancers, of heart attacks or strokes. However, it is by applying the ICC criteria that studies may at last perhaps identify those parameters which offer the 95% plus sensitivity to pick up ME/CFS sufferers, at an early stage of their illness to ensure that adequate rest, nutrition and pacing may prevent worsening of the illness and minimise the disability longer term. Even more excitingly, it is by applying ICC criteria (and even more stringent criteria perhaps) that quality, focused research might unravel the pathogenesis of this illness and a treatment that is effective.