What I will discuss:
1) Showing the real danger that ME CFS may be claimed by psych lobby as a psychiatric condition through IOM claiming a new ICD 10 category for SEID. (ME/CFS patients will have no choice, BUT to go with SEID, which is CFS + PEM).
2) Understanding PEM in Ramsay ME never was malaise (it was neurological CNS reaction to exertion)
.
3) PEM in IOM/FUKUDA incorporates emotional malaise, this is ripe for the BPS model of psych fatigue.
4) ME patients welcoming SEID means they have no abilty to sue for medical harms, IF, ME/CFS becomes re-categorised as psychological, once the organic CFS patients flock to SEID believing this to be their best option.
The best case scenario:(possible outcome)
ME friendly researchers keep publishing biomedical evidence using the ME name.
New pathogens are associated to ME soon, and found in high numbers in people with Ramsay type ME which the SEID fails to incorporate (no abnormal medical signs are required for SEID).
People with 'classic ME', are diagnosed with a new infection based autoimmune disease.
The worse case scenario: (probable outcome if no one contests the IOM legally in America).
Influenced medical journals may refuse to allow ME researchers to title their work ME, and force a title of SEID
if ME becomes ME/CFS, becomes psych categorized. Pathogen associated novel ME findings are then 'lost' within SEID, due to the lack of consistent findings because of SEID being a rehashed British CFS/ME criteria.
Note that PEM
in ME CFS doesn't mean anything diagnostically it is
SELF REPORTED. PEM in SEID thus does not have to exist, it can and will exist (In some) in patients minds. Psych's will thus love the SEID.
Medically when practicing medicine, you need to TEST PATIENTS to show they have post exertional relapse.
PEM = not ME. PEM = ''Feeling worse''. This could be done with cytokine assays (immune activation) heart rate and bp responses, and in less severely affected VO2 max testing. The CDC's Beth Unger rejected 2-day VO2 max outright, this is on record. (NB: Single day V02 max only captures people with deconditioning and does NOT demonstrate what biomedical CFS ME patients have, unique to them).
Doctors use tests when patients report abnormal physical events happening to them.
Fukuda CFS and IOM SEID does not require this.
NB: A somatizer can happily live within SEID (As has happened with CFS).
By encouraging the somatizer to do more gradually (activity diary), by gently showing them ''all your tests are normal'', the somatizer will report their worrying fatigue is less troublesome. We all know this. Thus you can prove that CBT ''works for some with SEID to increase their activity levels''. It's so easy to predict this!
How is it possible for a mentally ill person without organic disease, to get diagnosed with SEID?
Psych patients ALSO feel worse when addressing fears, such as fear of exercise (this exists in some), and thus can also
SELF REPORT PEM, because they FEAR exercise or have the abnormal illness beliefs that organic disease based ME/CFS patients don't!
Due to heterogeneous cohorts,
we know for a fact psych patients are scooped up by Fukuda CFS and will be by SEID in the future. Why? Because no tests are required for SEID and the symptoms and complaints of ME and CFS can be replicated or simulated by the misdiagnosed or somatizing patient - without question). Because of Fukuda CFS and British CFS/ME weak criteria we have people running marathons who say they have or had ME (a state of CNS inflammation), but provide no medical evidence how this is possible whilst suffering from an acquired disease, science cannot cure. This phenomena will occur once again thanks to IOM creating SEID and using such poor inclusionary criteria.
NB: This is not the fault of any patient, but how criteria are developed and used in clinical practice by doctors. (Doctors forced to use them I might add).
No one knows what will happen to 'ME' (via SEID), but when we do, it may be too late:
In 2015 and beyond, unless Americans take legal action against the IOM to halt the IOM becoming in place, SEID will replace a diagnosis of ME/CFS. This means all patients will be legally classed as having SEID (for medical purposes not personal opinion). IF that occurs:
ME/CFS sufferers who test positive for a new pathogen (e.g. retrovirus HERV, bacteria) misdiagnosed with SEID won't be able to leave SEID to claim they have ME/CFS, if ME/CFS is re-classified as psych. Note I say ME/CFS, and not ME.
ME may remain ICD:10 G93.3, but it will have no future research allied to it, if the IOM get their way = no evidence the novel pathogen patients ever had it and were medically neglected = get out of jail free card for those who placed ME inside CFS.
The Lancet reported that Prof Wessely 'welcomes the report' (SEID). A psychiatrist welcoming SEID, how curious. Is this because SEID ends 'ME' for good (if the British drop CFS/ME in UK), ME is what is said by psychs not to exist. Potentially, yes.
The IOM want to make a new ICD 10 clause for SEID, this will allow for 'influence' to turn ME/CFS into psych. How? Psychs can
accurately state, that the 'majority of people with organic CFS are now using the term SEID'. As we know psych chronic fatigue is genuine, we want CFS, or the CFS/ME. This would ''help patients''.
Taking legal action for patients killed, harmed, or who develop iatrogenic PTSD will be next to impossible:
ME and Severe ME patients may never be able to sue for disability discrimination and personal injury from medical neglect (e.g. development of medical conditions, due to inflammation not being addressed that then has lead to irreversible damage to the person told they had psychological ME).
It means the SEID can be used to trap ME patients inside a non specific, vague chronic fatigue disorder once again. SEID does not require ANY signs of neurological dysfunction.
Dr Ramsay describes Post Exertional Relapse,
PEM (''Malaise'') is not what Ramsay defines, but CDC and IOM speaks of!!!!
''Malaise'' = DOES NOT DESCRIBE NOT BEING ABLE TO MOVE for weeks AFTER MILD ACTIVITY.
RELAPSE OR CRASH DOES.
''Malaise'', does NOT equate to this state of
unique ME, CNS dysfunction.
Malaise is also associated to EMOTIONS.
Malaise:
''an uncomfortable feeling something is wrong''.
Thus this SEID malaise can be a BELIEF, the BELIEF in an untreated physical cause = British CFS/ME 'treatment' protocol (CBT to cure belief in physical cause). Note i didn't say GE, I said CBT. Health and insurance agencies LOVE CBT, it's CHEAP and easily hyped as no tests are required to show before and after effect medically.
Someone with cancer can be co-erced with CBT to walk 500 steps each month incrementally, but this doesn't mean their cancer is a belief.Yet this 'doing more' evidence, is the jewel in the crown of the PACE trial and other psych interventions. BPS CFS model claim: Increased activity (via CBT) demonstrates fears can be overcome as the patient 'did more'. This means, the CFS can be overcome.....(claim). Not proven.
Healthy people can feel 'malaise' after going on walk into town and feeling tired and run down.
PEM is an inappropriate term to describe the unique energy and CNS reactive features of ME (not seen in any other condition), and means nothing if NO TESTS ARE USED as it remains SUBJECTIVE and can be denied as it never needs to be proved.
Patients want to prove their ATP dysfunction (2-day CPET). The CDC won't let them.
CFS research has proven that patients Post Exertional RELAPSE can be explained by excess muscle acid, reduced blood flow to the brain, oxidative stress, and immune activation (Inflammatory cytokines affecting pain and cognition) amongst other findings. Feeling malaise is NOT explained by CFS biomedical research that demonstrates reduction of IQ and thinking speed.
CFS biomedical research demonstrates NEUROLOGICAL DYSFUNCTION. NOT MALAISE. (A feeling of being unwell, or a belief in something is wrong).
SEID amounts to answering a few simple questions from a doctor to the patient of hearing a self reported malaise (I feel worse) + chronic fatigue, aka British CFS/ME criteria. That is simply laughable, and why some scientists, doctors and critical thinkers (rightly) fall over laughing at the SEID concept to 'define a disease'. An invisible one, literally (no tests).
How far did British CFS/ME criteria (Chronic Fatigue + PEM) get the British? Absolutely nowhere. No screening tests = trapped forever, as has happened since CFS was created in 1988, and will continue to happen.
SEID is unfit for purpose to define and with future research treat the unique CNS dysfunction of ME as no neurological signs are required to be diagnosed, to have SEID!
SEID allows the potential for psychs to own, to have ME/CFS once and for all. This allows the IOM to get the HHS/CDC/FDA and the whole host of medical health agencies off the hook for 30 years of neglect.
If this happens no realistic large-scale legal action is possible for patients, who's lives, careers, and families lives have been devastated from being told they have 'fear of exercise', because the organically sick people with ME/CFS will have no option but, to wander back into CFS part two, SEID.
There is a positive and possible way out of this for organically ill CFS and ME sufferers:
We need the best case scenario to occur, one of ME friendly researchers publishing pathogen and autoimmune studies in the future under the heading of Myalgic Encephalomyelitis, or, we have heterogeneous cohorts for another 30 years, due to SEID being weaker than CCC CFS. I repeat, SEID is weaker than CCC CFS and should be rejected by all biomedical ME researchers because their interest in 'ME' can never be resolved to elucidating what is behind using SEID criteria.(We know this seeing the huge disparity in CFS biomedical research using Fukuda).
Dr Enlander and others agree with me, as they see real ME and CFS patients, not people who have 'malaise' after doing an activity, which includes 'burn out' chronic fatigue sports-persons, who as we know, by gradual activity re-introduction are back at work. (Logical using no tests to diagnose them). Recovery in a neurological disease state with gradual exercise of chronic immune activation, dysautonomia, eventual immune suppression and neuroendocrine dysfunction is precisely what doesn't happen in a state of chronic ME CFS.
These misdiagnosed patients, will be included within SEID, because they too suffer from 'malaise' after doing an activity and NO TESTS are needed to verified this to begin with. (Such as elevated resting pulse rate, or LOWER pulse rate during exercise - as seen in organic CFS which is a dysautonomic response).
SEID is not a disease, and this is precisely why psychiatrists are laughing whilst retiring, and will be more so, if ME/CFS is given a psych classification because the fake patient advocates are 'in agreement with the IOM' that ''patients want the SEID instead of CFS''.
They most certainly do not, because they includes the severely affected. 1 in 4 of us, or when the truth comes out, a lot more than 1 in 4 (due to heterogeneous dilution and fatigue based criteria).
SEID is fantastic rapid tool to diagnose unexplained chronic fatigue states,
and a disaster for a specific disease state, ME. The IOM is on record ignoring the 50+ ME researchers (who would not accept chronic fatigue + PEM as a diagnostic criteria for ME). Thus the IOM didn't fairly 're-define ME CFS' at all, they just claimed they did.
This is important, because the expert opinion of ME doctors, was ignored by the IOM and no ME experts (they weren't allowed to take part in the IOM contract), took on the task to 're-define' ME CFS as SEID. Instead, non experts and people allied to 'fatigue clinics', took part. ME is not a fatigue based condition, it is a neurological inflammatory state. (NB: Fatigue is a normal part of every day life).Fatigue is also subjective if no tests are used. Fatigue thus doesn't have to exist, and can exist in the mind of the individual. (What psych's need to show that CBT works).
Powerful people in certain places of influence are potentially risking re-writing your MEDICAL and LIFE history as a neglected and possibly abused patient in society with SEID as they did with Fukuda CFS.
This is only possible by deleting ME from future research, and replacing it via SEID (re-hashed Fukuda).
If ME is forgotten about, then you never were an ME patient, you were 'something else'.
Something else, doesn't win a court case, it gets put in a mixed bag of people, whose laywers on the DEFENCE TEAM will be able to SHOW EVIDENCE THAT CBT WORKS, and thus no one 'intentionally harmed your client', it was all a big mistake. (Yea right, that's why IOM created SEID in the wake of the XMRV story, as it became global news that inside CFS, is a serious debilitating disease).
SEID does not diagnose or define a disease, it defines a BELIEF in a disease, due to 'self reported symptoms'.
CFS all over again. Who benefits from that? The severe bedridden ME sufferers? The housebound ME sufferers? Or the moderately fatigued patients who can attend clinics for vitamins and a pep-talk to 'do more' and 'take things slowly'. (Fatigue is not the main symptom of ME). Pain, Immune activation and CNS dysfunction is, such as severe OI. These ME traits are OPTIONAL SEID criteria.
Once you are chronically infected, inflamed, and disabled, it's too late to do CBT like a good little girl. And that's what ME is a collection of - inflammation and immune activation/suppression. Once you have neuroinflammatory severe ME, it's too late to go down the gentle prompting school of BPS fatigue based management. (What SEID allows for).
And that's how we ended up like this, in the first place. Heterogeneous cohort from Fukuda, and now SEID.
The patients do NOT benefit from this, private business and health agencies desperate to reduce costs, benefit from this.
