As you say, at the bottom the Labtestonline site mentions reactivation occurring in immunocompromised individuals. The problem for me in the claim that ME patients are immune compromised is that the major research groups working on ME seem to be agreed that we simply do not know that. (And quite a lot of people on PR seem to get no problems with infection - something that researchers comment on as well.)
To what major research groups are you referring? Clearly Dr Klimas and the people at the Institute of Neuro
immune Medicine (Klimas, Fletcher, Broderick) and the research team of Griffith University (Brenu, Marshall-Gradisnik, Staines) don't agree with you. Nor do the top ME/CFS clinicians who are using different immune modulators and antivirals.
What definition of ME are you using? I'm considering the ICC which says:
Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features.
A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
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1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation
2. Susceptibility to viral infections with prolonged recovery periods
While I think we can all agree that the precise nature of the immune dysfunction is not yet
fully established, research done on
well-characterized patient cohorts is showing abnormalities in the areas of NK cell number and/or function and CD8+ cell numbers.
As we all know, to our great dissatisfaction, research claiming to include patients with ME/CFS include people who probably do not have the neuroimmune illness we talk about here at PR. That has distorted the body of research literature on a number of physical abnormalites in "CFS". I prefer to look at the more recent literature using patients that meet the CCC or the ICC.
Certainly we are much too early in the research history of ME/CFS to claim that there's any well-established knowledge/treatment for ME/CFS. The research into the physical abnormalities of the illness is far too new to have made its way into medical textbooks and the knowledge base of most physicians. That does not mean that patients should have to wait until any ME/CFS treatment is accepted by the medical mainstream, which will take 10-20 years, before they get appropriate treatment.
When I chaired the IiME Research Colloquium I made a slide to put up at the end that started 'What do we already know'. It got a laugh from anaudience that included Dr Hornig, Dr Kogelnik, Dr Scheibenbogen, Dr Blomberg, Dr Newton, Dr Bansal, Dr Marshall-Gradisnik and several others and they all chimed out in unison 'nothing'.
I think you may be misrepresenting Drs Kogelnik and Marshall-Gradisnik, if not others, if you are suggesting that because an audience in which they were included chimed out "nothing" in response to "What do we already know?", they think we know literally nothing about ME, particularly about immune dysfunction in ME.
Nobody has a blood test that can be reliably predicted to even separate a population of ME patients from controls even on statistical grounds. I know that because I am desperately trying to find one to help design a trial. I would not need Canadian Criteria if I could just do a blood test that said 'immune compromised'.
Yes, we are early in research and we're not even
sure we can separate ME/CFS patients from other groups with idiopathic fatigue. That doesn't mean our researchers literally think we know nothing about the illness, or that patients who have lab results showing immune dysfunction should not be treated for chronic infections and immune dysfunction when possible.
We patients can't wait 10-20 years until there's a fully certified blood test for ME/CFS before we get treatment that will improve our conditions. Many of us will be dead before then, and huge numbers of us will have lost any form of normal life -- which is something of a living death in itself.
We can agree to disagree about immune dysfunction in ME/CFS.
I've kept a copy of this discussion so 10 years from now you and I can discuss the wisdom of our different approaches during those 10 years once the research has actually played out. If thousands of patients have died or become seriously impaired by the use of immune modulators and antivirals during that time when it turns out those treatments were completely unnecessary, I will humbly concede that my position was totally wrong and harmful to the patient population. If, on the other hand, it turns out that ME/CFS patients
are immune impaired, but thousands of them lived in misery because they were denied necessary immune modulators and antivirals,... well, I leave that up to you.
I sincerely hope that your investigations into the autoimmune aspects of ME/CFS reveal the truth about the illness, and provide a treatment path for the many suffering patients. I am confident that I am only one of tens of thousands of patients who are grateful for your efforts on our behalf.