MeSci
ME/CFS since 1995; activity level 6?
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- 8,231
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- Cornwall, UK
Thanks, Bob. Why isn't it the abstract? Because it's in the PDF. How does one make the print blush with embarrassment?
You could use this or this.
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Thanks, Bob. Why isn't it the abstract? Because it's in the PDF. How does one make the print blush with embarrassment?
I think the data from Dr Mikovits's group would go in with a lot of data from other groups that has so far not yet been found to be reliably reproducible. This is the big problem we have had in making use of any testing system to select or stratify patients for a trial. We need something that gives the same answer repeatedly. The extra difficulty with using antibodies to SFFV is that the data from Dr Goetze do not even come with a control group of antibody negative CFS patients or an indication of the proportion of CFS patients with a high titre, or indeed any indication as to what should be considered a cut off titre.
So I am very interested in any test like this, indeed, if it can be shown to be reproducibly different in ME/CFS and if it correlates with immune features, but so far this test does not qualify. We also have the apparent catch22 that if this test does indeed mark a subgroup with immunodeficiency then maybe they should not be included in a rituximab study (which maybe seemed to be the message in the paper). There does not seem to be anything about the findings that would suggest that this would be a good group to treat with rituximab, which specifically targets B cell related problems.
To be constructive, can we produce a list of papers in which SFFV antibodies have been detected in ME patients? (Or are they listed in the book article?)The SFFV antibody test, which you so readily dismiss as "not yet being readily reproducible", has been proven to be exactly that, in multiple studies over a period of many years.
We also have the apparent catch22 that if this test does indeed mark a subgroup with immunodeficiency then maybe they should not be included in a rituximab study (which maybe seemed to be the message in the paper). There does not seem to be anything about the findings that would suggest that this would be a good group to treat with rituximab, which specifically targets B cell related problems.
I don't understand all the politics but, in a nutshell, we're a bunch of very ill patients, experiencing extreme personal challenges and medical neglect, desperately clinging onto glimmers of hope. When those glimmers of hope seem to be under threat, then people (understandably) react. I think it's just a shame that we can't be slightly more pleasant and understanding towards each other, and not always jump to the worst possible conclusions before a dialogue has even begun.
@thegodofpleasure, are you able to respond to Prof Edwards' point that ME patients without SFFV antibodies have not been used as controls so we don't know if they have the same immune dysregulation as ME patients with SFFV antibodies? In other words, how do we know that it's the SFFV antibodies that are causing the patterns of immune dysregulation discussed in the book article?
And do we know how big this potential SFFV + subgroup is? Are we talking 10% or 70%, or what? The chapter doesn't say but perhaps previous studies give an indication?
Lipkin's paper has not been released to date so any definitive conclusion from it can not be substantiated. Lipkin, himself, stated that any retrovirus sequence found will not be related to CFS.
Futhermore, none of the other viruses commonly associated with ME/CFS showed up in the first pathogen screen and the high throughput screening designed to look for any viruses including novel viruses drew a blank as well.
While praising Dr. Ian Lipkin and his work, he [Chia] suggested that a study using whole blood, not just plasma, would have been more conclusive. Dr. Chia had shown this in 2005 when a study he did found enterovirus in 60% of white blood cells versus only 10% in plasma.
Source: here.
However, I think the important question to ask is under what circumstances can a virus precipitate ME/CFS.
ME/CFS is not like AIDS. In case of the latter, nearly everyone who catches HIV will come down with AIDS if they don't take anti-retrovirals (except a small percentage of people who have the CCR5 Delta32 mutation genetic immunity to HIV).
ME/CFS appears to be frequently triggered by respiratory viruses such as enterovirus or EBV that pass easily from person to person by normal social contact, and thus infect many other people.
Yet we know that other family members in close social contact with ME/CFS patients do not necessarily develop the disease, even though many will likely have caught the same virus. So we need to look more closely at the circumstances under which these ME/CFS-associated viruses can trigger ME/CFS, rather than assume there is a virus that always causes ME/CFS every time.
A possible clue to these circumstances comes from Dr John Chia's observation that immunosuppressive corticosteroids given during the acute phase of a viral infection seems to be a recipe for creating ME/CFS.
This observation suggests that if you take immune suppressing drugs like corticosteroids at a very critical stage when the body is trying to fight off an acute enterovirus infection, this may weaken the immune response such that the virus gets a better foothold in the body tissues — ie, the virus may penetrate deeper into the body, penetrate deeper into more tissue compartments of the body (such as the brain or nervous system) — and so this viral infection becomes chronic and permanently insinuated in the body, and the patient may then come down with ME/CFS.
Or if immune systems are suppressed by overexertion or stress, as discussed in this post of mine replying to yours in another thread.
Or if immune systems are suppressed by overexertion or stress, as discussed in this post of mine replying to yours in another thread.
Yes, if extreme stress leads to elevated cortisol and the attendant immune suppression, and one catches an ME/CFS-associated virus during that period of extreme stress, it may likewise allow the virus to insinuate itself more deeply into the body, such that even when immune strength returns, the virus is now too deeply dug in for the immune system to clear or control it.
Dr Chia uncovered this etiology of acute infections + corticosteroids = ME/CFS by careful and detailed questioning of his patients' histories just prior to them coming down with ME/CFS. Chia is stickler for taking full patient histories, as he thinks all the clues are there in the history.
This corticosteroid etiology of ME/CFS seems like a very important clue, and more research should be done on this.
Yes, if extreme stress leads to elevated cortisol and the attendant immune suppression, and one catches an ME/CFS-associated virus during that period of extreme stress, it may likewise allow the virus to insinuate itself more deeply into the body, such that even when immune strength returns, the virus is now too deeply dug in for the immune system to clear or control it.
Dr Chia uncovered this etiology of acute infections + corticosteroids = ME/CFS by careful and detailed questioning of his patients' histories just prior to them coming down with ME/CFS. Chia is stickler for taking full patient histories, as he thinks all the clues are there in the history.
This corticosteroid etiology of ME/CFS seems like a very important clue, and more research should be done on this.
Just before I developed a severe virus that caused encephalitis after which I was never the same I had received a tetanus vaccination. I read that this vaccine in particular creates an immune suppression for some considerable time. One article stated the immune system remained flying at half--mast for as long as eighteen months after vaccination.
I know that vaccinations can sometimes precipitate ME/CFS, but I have never heard of tetanus toxoid vaccination actually weakening the immune system.
That bite will have contained a lot of pathogens other than (possibly) tetanus.
anyone know what Dr Chia is doing to try and to take his research forward?
"I tell every doctor now, you don't give steroids unless the patient's life depends on it."