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The problem in defining severe ME is a problem for research accuracy and biobank sample collection:
1) Biobanks will never find a 'cause' because they are based on a diagnosis of fatigue of unknown origin, not doctor proven abnormal neurological/immunological signs known to occur in someone with diagnosed Myalgic Encephalomyelitis. This anomaly ruins the research pool of ME patients who need to be research, massively.
2) Diagnosing 'severe ME' with no tests, and then preceding to take blood from someone trapped at home or in bed has a number of physical and psychological causes does nothing to reduce the muddle. This again ruins the research pool of ME patients who need to be researched, considerably.
With the two factors combined, a claimed research group of 'severe ME' (such as when claiming a finding or pathogen has been found) may only be as high as 20% with the actual condition. This is because tests aren't run to make it more likely the person has 'severe ME', rather than 'severe Lyme' or 'severe nutritional deficiency' or 'severe mental health problems - all of which can legitimately be experienced as 'severe ME', as no tests are required to confirm a diagnosis of ME (via CFS, via CFS/ME criteria used in UK and the world - as they're based on unexplained long term fatigue).
Solution 1: Use as strict criteria as possible
Use ME-ICC and CC CFS criterias to filter patients - this will increase likelyhood of physical causes found in 'CFS' patients over the decades. For example, we know that biomedical findings in 'CFS' tend to be found by doctors (who are also researchers) who accept ME is 100% organic (De Meirleir, Peterson) and not by those who are trying to prove the opposite (pschy lobby) and the use of Fukuda CFS (CDC).
Solution 2: Use doctor witnessed tests for 'signs' of disease and verified abnormal test results
A diagnosis in 'severe ME' research cohorts should require a doctors lengthy medical report and physical tests demonstrating signs of neurological disease (such as proof of Autonomic Dysfunction, gait changes, cognitive dysfunction etc) and the classic immune activation signs of inflammation in blood markers (cytokines and chemokines) to produce a real pool of probable 'severe ME' patients.
This can be done. Someone bedridden can still have their autonomic nervous system tested via an ECG and a computer (heart rate variability test performed). It's not a TILT test, but it is at least a verified test and an objective measure. The same would go for a neurological exam, in which PWME (severe) can have subtle changes on. (Dulled or brisk reflexes, droopy eyelids, facial palor, eyelids twitching after extensive talking, delayed pupil response to light changes) that aren't noted in NHS UK 'CFS/ME' patients based on fatigue, but are seen in people with severe ME.
Then we can research the patients, with more confidence they are likely 'severe ME', rather than just because of their status of a tick box in a piece of research where a blood sample is analysed because a patient has ticked a box that says 'I am housebound or bedridden'.
Until people do this, to says someone has 'severe ME' means little at all and to get blood from 'them' in terms of finding causative pathogen or defect, a 'biobank' is largely pointless in terms of furthering science and treatment.
Heterogeneity wrecks ME via CFS and via very weak diagnostic criteria and calling someone 'severe' because their blood is taken because they are either bedridden or housebound.
My proposal is common sense, but much more costly, which is why no one will do it. It's much easier to stick to what hasn't worked for 40+ years.
The problem in defining severe ME is a problem for research accuracy and biobank sample collection:
1) Biobanks will never find a 'cause' because they are based on a diagnosis of fatigue of unknown origin, not doctor proven abnormal neurological/immunological signs known to occur in someone with diagnosed Myalgic Encephalomyelitis. This anomaly ruins the research pool of ME patients who need to be research, massively.
2) Diagnosing 'severe ME' with no tests, and then preceding to take blood from someone trapped at home or in bed has a number of physical and psychological causes does nothing to reduce the muddle. This again ruins the research pool of ME patients who need to be researched, considerably.
With the two factors combined, a claimed research group of 'severe ME' (such as when claiming a finding or pathogen has been found) may only be as high as 20% with the actual condition. This is because tests aren't run to make it more likely the person has 'severe ME', rather than 'severe Lyme' or 'severe nutritional deficiency' or 'severe mental health problems - all of which can legitimately be experienced as 'severe ME', as no tests are required to confirm a diagnosis of ME (via CFS, via CFS/ME criteria used in UK and the world - as they're based on unexplained long term fatigue).
Solution 1: Use as strict criteria as possible
Use ME-ICC and CC CFS criterias to filter patients - this will increase likelyhood of physical causes found in 'CFS' patients over the decades. For example, we know that biomedical findings in 'CFS' tend to be found by doctors (who are also researchers) who accept ME is 100% organic (De Meirleir, Peterson) and not by those who are trying to prove the opposite (pschy lobby) and the use of Fukuda CFS (CDC).
Solution 2: Use doctor witnessed tests for 'signs' of disease and verified abnormal test results
A diagnosis in 'severe ME' research cohorts should require a doctors lengthy medical report and physical tests demonstrating signs of neurological disease (such as proof of Autonomic Dysfunction, gait changes, cognitive dysfunction etc) and the classic immune activation signs of inflammation in blood markers (cytokines and chemokines) to produce a real pool of probable 'severe ME' patients.
This can be done. Someone bedridden can still have their autonomic nervous system tested via an ECG and a computer (heart rate variability test performed). It's not a TILT test, but it is at least a verified test and an objective measure. The same would go for a neurological exam, in which PWME (severe) can have subtle changes on. (Dulled or brisk reflexes, droopy eyelids, facial palor, eyelids twitching after extensive talking, delayed pupil response to light changes) that aren't noted in NHS UK 'CFS/ME' patients based on fatigue, but are seen in people with severe ME.
Then we can research the patients, with more confidence they are likely 'severe ME', rather than just because of their status of a tick box in a piece of research where a blood sample is analysed because a patient has ticked a box that says 'I am housebound or bedridden'.
Until people do this, to says someone has 'severe ME' means little at all and to get blood from 'them' in terms of finding causative pathogen or defect, a 'biobank' is largely pointless in terms of furthering science and treatment.
Heterogeneity wrecks ME via CFS and via very weak diagnostic criteria and calling someone 'severe' because their blood is taken because they are either bedridden or housebound.
My proposal is common sense, but much more costly, which is why no one will do it. It's much easier to stick to what hasn't worked for 40+ years.
I actually disagree in part . I think In severe m.e the unusual features such as profound concentration issues, sensitities to light, problem being upright etc become very pronounced & " tell tale "and should be quite easy to diagnose and differentiate certainly from mental health problems. I was too sick to see my consultant long but from A five minute consultation he said he could see that although I was thoroughly jarred off I didn't have MDd + my history was classic m.e too. Also the sicker I got the more every other possibility including lupus, rarer diseases & nutritional was excluded so I doubt thats not being picked up & I would bet most severe have had more testing than someone high function Ill 18 months. Lymes is a possibility as in milder cases but I do think the severe can be more relied to be obvious & genuine m.e , as in multi system disease, than someone given a uk cfs diagnosis whilst still at work with unexplained fatigue. But even if severe m.e research doesnt yield info relevant and beneficial to the less disabled community they should still be researched., just imagine if people with primary progressive MS had just ben left to it because they are a minority, unthinkable.
I do agree that more testing in homes could be done to Better define the severe m.e group scientifically & get us some solid medical literature out there on severe m.e. Heart rate variability is something I'd love explored at home & in centres such as the Burrswood private clinic in uk which specialises in m.e. somewhat. Its been very hard being severe with the average dr seemingly mystified as to what the hec has gone wrong and invariably projecting into that void their own ideas about deconditionng & rehabilitation.