IOM are not accurate to say no inflammation evidence is there for ME CFS. Anyone who has access to the internet can Google search CFS and inflammation to find their are published studies on neuroinflammation.
For example:
Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An 11C-(R)-PK11195 PET Study. Nakatomi Y1, Mizuno K, Ishii A, Wada Y, Tanaka M, Tazawa S, Onoe K, Fukuda S, Kawabe J, Takahashi K, Kataoka Y, Shiomi S, Yamaguti K, Inaba M, Kuratsune H, Watanabe Y. J Nucl Med. 2014 Mar 24.
Cort Johnson wrote about this paper and more:
Key Findings Needless to say ME/CFS patients had significantly higher levels of fatigue, pain, cognitive problems, and depression than healthy controls although levels of depression were below that required for a clinical diagnosis;
Neuroinflammation in the brain overall was higher in ME/CFS patients than in healthy controls; Neuuroinflammation was higher in the key brain areas – the cingulate cortex, hippocampus, thalamus, midbrain, the pons, and the amygdala (many of which have previously been implicated as playing a role in ME/CFS and FM); Of the four proinflammatory cytokines measured only circulating levels of peripheral IFN-gamma were higher (but not significantly) in ME/CFS patients;
Source:
http://www.cortjohnson.org/blog/201...yelitis-back-future-chronic-fatigue-syndrome/
And then Dr Komarroff's comments about CFS involving low grade chronic brain inflammation at the IACFSME 2014 Conference were as follows:
In the Question and Answer session, Komaroff was asked if neuro-inflammation was not encephalomyelitis, to which he replied: “Yes. If it were confirmed by multiple other investigators it would, for me, say that there is a low-grade, chronic encephalitis in these patients, that the image we clinicians have of encephalitis as an acute and often dramatic clinical presentation that can even be fatal has – may have – blinded us to the possibility that there may be an entity of long-lasting – many years long – cyclic, chronic, neuro-inflammation and that that underlies the symptoms of this illness”, commenting that it was “entirely plausible and these data are consistent with it”.
Source:
http://www.meactionuk.org.uk/Komaroff-Summary-San-Francisco-March-2014.htm
Just because an IOM or CDC doesn't allow for brain inflammation to be part of a proposed inclusionary criteria process for SEID, doesn't mean that it's not happening in PWME PWCFS.
We know experienced biomedical ME CFS researchers would have included (at the least) references to historical CFS neuroinflammation. As we know these ME CFS experts of a biomedical nature were removed from the ability to be included in the panel of the IOM's redefining of ME CFS.
We all know a Dr Cheney, Dr Bell, Dr Enlander, Dr De Meirleir, Dr Peterson, Dr Montoya team up would have involved something far more stringent that the SEID criteria: Chronic Fatigue, Cognitive Dysfunction/OI + PEM - all subjective and not requiring signs a doctor can measure.
A somatizer, a troubled depressive, and someone with a sleep disorder and stress can all legitimately meet SEID criteria, which is why certain psychiatrists welcomed SEID:
Chronic fatigue with no tests.
Difficulty thinking with no tests/Difficulty standing up with no tests.
Post exertional malaise with no tests.
BUT....someone with ME CFS can demonstrate their organic ME CFS with:
Balance testing, e.g. Romberg.
TILT testing to prove autonomic nervous system dysfunction. (neurological).
Psychoneurometric testing to demonstrate IQ vs predicted IQ.
Cardiac responses to upright posture, exertion, post exertion.
Inflammatory marker testing for immune activation.
So we can see no agreement of a compromise, SEID is not a 'disease' as no
signs of disease are required for diagnosis. (Unlike ME).
SEID is not about ME biomedical CFS, it's about SEID, hence brain inflammation isn't on the cards.
SEID is useless for ME biomedical CFS, because the British CFS/ME already has Chronic Fatigue + PEM and this has gotten CFS/ME patients precisely nowhere other than to be dipped in PACE lies.
Giving the Americans a Fukuda CFS + PEM won't get ME biomedical CFS sufferers anywhere, guaranteed. PEM is not needed to be demonstrated and can still remain psychosomatic. Researchers can manipulate this, and will do. SEID simply buys governments in denial of what they've done, more time to let the infected people expire from disease and old age.
Conversely SEID is a great for people who want recognition for having unexplained heterogeneous chronic fatigue states that are to be taken more seriously than Fukuda CFS. For these people, SEID is great and will be welcomed. Nothing wrong with that, if you don't have ME or biomedical CFS and don't have a system state of low grade inflammation, autoimmunity, infection, and immune suppression - none of which are part of having SEID!
Hence if you have ME, you cannot have SEID, you exceed the criteria as you have proof you are sick. SEID requires no proof, as Fukuda CFS also required no proof, hence people can 'recover' with CBT, GE and stress management - unlike with MS and Lupus and unlike with ME.
And thus the IOM attempts to redefine biomedical CFS and ME as a 'SEID' is a big fail.
Legally, scientifically, medically, and morally one cannot contain a crippling neuroinflammatory state within a label, that rejects the concept of this inflammation!
Those with ME and organic CFS that fit ME signs, need a place to be housed, the SEID has rejected them, so it will remain ME, especially once more research evidence comes to lights of neuroinflammation and the Ramsay hypothesis of an encephalomyelitis state being accurate.
Untreated Lyme (bacteria) can cause encephalomyeltis. Tie a pathogen into 'ME' and you have this becoming not a 'chance', but a certainty once you screen people with ME as having this infection and having brain inflammation, rather than getting a 20% positive cohort via CFS or SEID.
We all know this, they know this, and what will create lasting and meaningful respectful discussion, will be the permanent separation of SEID and Fukuda CFS, from ME via quality research, treatment, and the denied ME sufferers getting some function to their lives back to demonstrate they never had the heterogenous, CFS or SEID to begin with.
That is all the patients want and ask for.
This cannot be achieved through heterogenous grouping. Ever. 1988-2015 has proven this. That's 27 years of suffering and deaths of the 'CFS' patients and 46 years for ME patients .
Someone should stand up and say, no, enough to this insane posturing with concept of disease and illness using no screening tests. Any doctor will agree with me, doctors needs tests or you're inviting in skepticism, and justified skepticism. Do you employ someone with a Phd who is thought to be intelligent, but is, because a brochure told you they are? A doctor must diagnose with evidence. The SEID requires no evidence at all, the patient is organically ill.
How curious it took a million bucks to pull that off, when it was FREE to use the ME-ICC and the CCC CFS which was more stringent than the weak SEID criteria!
Science, I believe, will be the 'person' to prove the inflammation. Meanwhile gutless officials continue sitting on their hands, whistling into the wind, ignoring the trail of human misery left behind. Everyone is watching, and waiting for science to provide the answers.
If science is permitted to study the cohorts of people with signs and symptoms of Ramsay's ME, you get a higher percentage outcome from studies.
The IOM have signalled ME cannot be allowed to exist poltically. The IOM 'redefinition of ME CFS', is a proposed condition (SEID) that doesn't actually include tell-tale signs of suffering ME. Who dreamed that idea up? The 50 experts on ME who wrote to the IOM rejecting their proposal and played no part in creating SEID, or the fatigue clinic cheerleaders who are over the moon they can 'treat people' with unexplained chronic fatigue and sleep disorders needing no tests to diagnose their patients with the SEID?
So, sadly, no one can compromise if they have ME by accepting SEID as it doesn't allow their disease to be diagnosed, within the SEID, through evidence based means, using signs of disease or tests.
Confirmatory tests or signs (e.g. Parkinson's gait) in medicine are the necessary gold standard for diagnosis, never mind researching it, but the IOM don't want this for the redefinition of ME CFS.
Consider why, who benefits, when they benefit, and who doesn't benefit.
