Discussion in 'Latest ME/CFS Research' started by Kyla, Oct 3, 2015.
Thanks for posting this.
ME and CFS patients have been noticing for years their IgG levels are all over the place when they test privately (exclusionary tests to get a diagnosis of CFS will never find the disease you have only the ones you don't have).
Sadly this IgG subclass test is not common, although MBL is relatively easy to get from an immunologist who half believes you that you get repeat infections and screens for it. Also as research, I would look for 'Specific Antibody Deficiency' in the patients, a lack of certain antibodies.
Here's the condition:
Some with ME and CFS report that too, and naturally never know until they look for antibodies that are meant to be there, but aren't - hence the patients repeat infections noted (doctors tend to run a simple FBC/WBC and say, well your blood count is normal, so you're fine).
When the ME CFS patient knows more about microbiology and immunology than general doctors who are paid to look after you, you know you're in trouble as a patient for accessing good quality delivered care. It's nice to see researchers are now catching up with the patients knowledge.
If only I was joking!
Did they not test for T-cell values?
i was being treated for years for chronic fatigue syndrome and fibro. when yrs later i was finally dx ....... with cvid. common variable immune difficiency. with hypogammaglobulenemia. go to a good "clinical" immunologist and ask to be tested for subclasses 1,2,3, and 4. iga, igm, and igg. so many yrs wasted, when i could have been treated with iv gamma globulin. as i am now for past 7 yrs. it doesnt take your fatigue or pain away. but it does stop the infections. which is all its supposed to do.
well, better late than never.
I started a poll a few weeks ago before it was shot down due to lack of scientific rigor. Regardless, IgG and IgA deficiencies showed up in many.
The full text isn't on research gate yet, so I haven't had a chance to really look at this one.
Joainerav, this paper seems to imply that you could have both.
I think mannose binding lectin deficiency is interesting. I have none.
It's been discussed before - see this thread for example.
Lab tests for MBL deficiency in America:
hi msf. yes i realized in my post , that i hadnt made that clear. i do have both. but i was angry that i hadnt been dx with the cvid sooner. it would have cut my infections way down. the infections weaken one so. the gamma globulin does cut the infections way down. keeps them at bey.
My pattern, and I think I'm not alone among PWME, is that my hypogammaglobulemia developed over years of ME. Yes, I have it now, but my IgG numbers were not low enough for the first 10 years of ME to qualify for IVIG. So in my case, the identifiable immune dysfunction was not an alternative diagnosis to ME, but a probable consequence of ME.
Maybe if I got tested for the first time this summer I would be thinking that I had a known immune deficiency all along rather than ME, but it's not true. So for me, at least, no years were wasted with a "wrong" diagnosis. I had ME all along. The hypogammaglobulemia is new (by diagnostic standards). I'm just lucky my ME/CFS specialist (and immunologist) has been watching my immune function and put me in a position to get IVIG when I finally moved from "not quite eligible" to official hypogammaglobulemia.
I agree with you completely that tests of IgM, IgA, IgG, and IgG subclasses should be given to ME patients routinely. Sadly, they are not, and I suspect that treatable immune deficiency is often missed as a consequence.
I have IgG2 (& high IgG). So, I find this study interesting. I haven't been tested for MBL. Thanks for posting, OP @Kyla .
@SOC , my low IgA was very early on... I have no idea if the same is true of IgG though, because the first time they measured it was at Mayo, well into my illness.
Exactly. Many of us don't know if we have any Ig deficiencies at all because no one will test. Almost none of us have a history of tests to see if there are trends of decline or improvement. It's beyond idiotic.
ask your doctor to test , if you have many respiratory infections in a 12 mo. period. ones that take many antibiotics to heal. infections, is the key here. because your immune system is deficient and cannot fight them, ie , pneumonia, bronchitis, sinus infections.
@JaimeS is there a link to your poll...would like to see it...?
Some CVID patients on the Immune Deficiency Foundation site remarked years ago they had ME/CFS too.
Others have posted here on PR there may be an ME/CFS subgroup with antibody deficiencies who are exposed to enteroviruses known to take advantage of antibody deficits leading to chronic infection & neurological symptoms. Ties into some of Dr. Chia's research.
Most physicians don't routinely test immunoglobulin levels. Asked my GP to test mine & he used the Klimas/Fletcher Lab which was very thorough.
Here you go, @Gemini - though be aware the poll is flawed as I said.
Got it! Thanks @JaimeS.
The immune deficiency community as a whole has a large number of undiagnosed patients (like ME/CFS) & a shortage of "trained" clinical immunologists. Hopefully their advocacy efforts will improve things .Example IDF was recently commended by the White House for their Precision Medicine initiatives i.e. patient registries, electronic health records, etc.
You can also try a Google Site Search
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