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In this post I show you how CFS/ME could be an acquired immunodeficiency. Please share this informat

Wishful

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How do you know your viruses specifically raised IFN-g?

Can IFN-g not also be a marker of autoimmunity?

And what effect would IFN-g have that would create PEM? Peroxynitrite production?
Is it likely for a viral infection (that causes the usual viral symptoms) to not increase IFN-g? I assumed it as a given. As I understand it, IFN-g is one of the main factors responsible for what we feel as viral infection symptoms.

It might be caused by autoimmunity as well, but what I observed is that acute reactions (viral infections, muscle damage) triggered the same increase in ME symptoms, and also that an increase in TRP caused a similar increase in symptoms. All three are consistent with an increase in symptoms caused by kynurenine production. It's not a proven theory, but it does fit, and I haven't seen any theories that I like better.

IFN-g would increase IDO, which would increase kynurenine production. The symptoms do fit those caused by some of the nastier kynurenines, such as QUIN. I also had trouble with neurochemically-induced suicidal moods, which also fits with excess QUIN, and elevated MIPS (and TSH) which fits with elevated picolinic acid. Overall, my observations fit elevated kynurenines, and none of the observations contradict it, so it's still my top theory.
 

Learner1

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It might be wise to be tested to see if these statements are correct.

My IFN-g was high recently, after all of ny infections had been treated, and the high IFN-g was accompanied by 3 high cytokines relatrd to autoimmune activity.

Have you had your vitamin B6 and B2 levels measured?

https://www.ncbi.nlm.nih.gov/m/pubmed/25105221/

And, viruses can cause a lot of other biomarkers to be off as resources are used.
 

bertiedog

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hadn't felt "sick" for over 2 years prior to my diagnosis, but my doctors found I had 7 infections smouldering along, including EBV, which didn't show up with the normal titers but did show up on a PCR.
Might be going a little off topic here but I am very interested in what you have said regarding "smouldering infections" and I wonder if it explains what I experience as part of having ME/CFS. I regularly get what I think is a virus but often goes into an infection which is identical every time I get it. Usually its between Autumn and late Spring when I start getting very unwell and always starts in my throat and hugely affects my muscles and energy level. I can feel very unwell with it. Sometimes my immune system manages to get a hold of it with the help of some herbs like Andrographis but often I need antibiotics to get better. Actually it feels like a fire in my throat before I start on antibiotics.

Unlike you though I do feel ill very frequently with this thing that regularly comes along but what I just don't understand is how it can be identical every time I get it. BTW Nobody else ever catches what I have so it's like something that my immune system cannot permanently deal with. On a full blood count I always have low numbers of lymphocytes and its been that way for years but the NHS are interested in looking more deeply into this problem I have.

Pam
 

Learner1

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Might be going a little off topic here but I am very interested in what you have said regarding "smouldering infections" and I wonder if it explains what I experience as part of having ME/CFS. I regularly get what I think is a virus but often goes into an infection which is identical every time I get it. Usually its between Autumn and late Spring when I start getting very unwell and always starts in my throat and hugely affects my muscles and energy level. I can feel very unwell with it.
I actually had a very similar thing happen this paat month. Felt run down with a sore throat for 2 weeks, after having negaribe PCRs for EBB and CMV 6 weeks ago. My other infections cant be tested as I'm on IVIG so the titers wouldn't be accurate. I had been on acyclovir fir 3 months since an HSV2 outbreak.

But I'd been doing really well and then this unwell period. Then, I wpke up eith enormously swoen throat and felt like a truck hit me and spent 3 days in bed going back in Valcyte. I was still fatigued when I got up, but have gradually recovered day by day, til I'm back to normal now, 8 days later.

I dont know what it was. I don't think I caught anything new. I suspect it came from inside me, but weirdly, it worsened a day after I had IVIG. My past experiences have been that IVIG blasted anything that was brewing, but not this time, so I'm wondering if my T cells were at fault somehow. And, I don't know if the rest or the Valcyte, or both, helped. Wish I understood more.
Sometimes my immune system manages to get a hold of it with the help of some herbs like Andrographis but often I need antibiotics to get better. Actually it feels like a fire in my throat before I start on antibiotics.

Unlike you though I do feel ill very frequently with this thing that regularly comes along but what I just don't understand is how it can be identical every time I get it. BTW Nobody else ever catches what I have so it's like something that my immune system cannot permanently deal with. On a full blood count I always have low numbers of lymphocytes and its been that way for years but the NHS are interested in looking more deeply into this problem I have.

Pam
Are you sure it's a bacterial infection? Coukd it be some viral reactivation, like a herpes family virus?

I tbink how we experience such things has to do with how our immune systems work - we could have different situations.
 

Wishful

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It might be wise to be tested to see if these statements are correct.

My IFN-g was high recently, after all of ny infections had been treated, and the high IFN-g was accompanied by 3 high cytokines relatrd to autoimmune activity.

Have you had your vitamin B6 and B2 levels measured?
I did have a cytokine profile done many years ago. It showed normal levels of serum IFN-g at the time of the blood sample, at which time I felt fairly lousy. I'd eaten some cookies before that, which I knew would increase my symptoms by that time. Normal levels of IFN-g would still create some IDO and thus kynurenines, which would be increased by extra TRP in the brain due to the carbs.

I haven't had vitamin levels measured, but B2 does make my symptoms worse. B6 has no noticeable effect. The article says that B2 is a cofactor for 3-HAA, which in turn leads to QUIN and picolinic acid. B6 is a cofactor for all the kynurenines, including the good ones that counteract the bad ones, so it's reasonable for that to have no noticeable effect, while B2 does.
 

Wishful

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I don't see any point in updating my bloodwork, since there isn't anyone able to properly interpret the results. If the results did show abnormalities, I'd get prescribed treatments for disorders other than ME, which could be counterproductive. No, not worth the effort.
 

Learner1

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That's too bad. You might actually find a treatable problem if you do. Having a ME/CFS diagnosis does not merit any "evidence based" treatment, so pursuing it alone will ensure that you lie in wait, until, perhaps, 5-30 years from now, a treatment is finally found.

On the other hand, it is extremely likely that if you and your doctors were to look, using info the researchers have been finding, you would find a number of treatable conditions that might improve your function. A lot of the research in the past few years gives doctors a lot of clues to work with.

There are about 16 ICD10 codes that my doctors have applied to me and have improved greatly through treatments appropriate for these diagnoses. I'm not cured, but am much better than if I sat around waiting for a miracle...:rolleyes:

These could include chronic infections, immunodeficiencies, autoimmune antibodies, B12, amino acid and other nutrient deficiencies, endocrine system abnormalities, mast cell activation, or many other conditions.

Best wishes...:nerd:
 

Wishful

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We differ in our philosophies about health care. For one, my experience with doctors (Canadian medical system) is that they mostly deal with well-known diseases, and don't look for the latest unproven fads (genetic markers, nutrients or other substances not exactly 'normal', etc). I think the American system encourages doctors to do more tests and write more prescriptions, whether they're proven to be effective or not.

I don't believe the latest fads are of much use. They get lots of marketing attention, but are lacking in clinical evidence of helping patients. There seem to be plenty of people who claim benefits from cocktails of dozens of supplements based on some lab's testing. However, there are also plenty of people who claim the same thing for magic crystals, magnetic bracelets, and other outright quackery. I expect that if there was solid clinical evidence supporting a test/treatment, such as a specific antiviral plus supplements for the tested presence of some hidden inactive virus, Canadian doctors would be doing the tests/treatments.

In short, I don't expect my GP to order fancy new tests that aren't available from the local labs without really strong evidence to support it. Magazine articles on methylation or hidden viruses won't do the trick. I also don't believe in those fads enough to make the effort to try to get the tests done elsewhere. I don't believe that some of my ME symptoms are due to non-ME causes (as reported in the latest issues of health magazines, with exclamation marks!!!!), and I've tried enough drugs and supplements to have no faith that they'll help. I might discover something else that reduces my symptoms, but I expect it will be another accidental discovery, not something claimed by a magazine article.

Still don't see any point in going to the doctor for more tests. Not until the researchers come up with a clinical test for ME, or at least a strong recommendation that ME victims be tested for 'x' because we are likely to have whatever non-ME problem 'x' is.
 

unto

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Also I think that at the base there may be a germ (virus?) That lowers the immune system, but I do not think it can be a germ known as ebv or cmv .... Because if it were so after many decades would have emerged its responsibility. ...
I too had a noticeable lowering of the cd4 and nk the first years of ME are now back in the norm (I noticed that the scientific community has expanded the "normal values" of the lymphocyte typing, especially regarding the cd4 account, from the end of the years 1980, this could be due to the fact that many patients of ME (unaware and undiagnosed) were going to control the typing, and since they were "healthy" have led the scientific community (wrong) to widen the reference values.
 

geraldt52

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Still don't see any point in going to the doctor for more tests. Not until the researchers come up with a clinical test for ME, or at least a strong recommendation that ME victims be tested for 'x' because we are likely to have whatever non-ME problem 'x' is.
The other problem I have with what appears to be a growing trend, of testing for everything imaginable then prescribing a slew of things to "correct" anything even marginally high or low, is that I couldn't possibly take all that stuff anyway. I read the things that people are taking and know that if I tried anything remotely like that I'd end up bedbound or worse. Why see a doctor who's going to prescribe a slew of stuff if you couldn't take it anyway?
 

Wishful

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Good point. Doctors have no idea what to prescribe or what not to prescribe for ME patients, so you can probably do better on your own. I have used my doctor to get prescription drugs that I thought were worth trying, such as LDN, but most of the things the doctors chose to prescribe were ineffective or counterproductive. Hmmm, most of the ones I came up with were ineffective too... :meh:

Last time, my doctor found that my cholesterol was just a wee bit elevated, so he gave me the choice between statins and fish oil. I did my research, found that statins were dangerous and that fish oil had no real evidence supporting it for cholesterol reduction (actually it does boost bad cholesterol). Even the bad research that claimed evidence for benefits only showed a few percent reduction in heart problems. Moderate exercise was proven to reduce heart risks by 75+%. I told my doctor that I walk daily, so I was satisfied with my heart health.
 

FMMM1

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Good afternoon, everyone,
I've finally got the study I put forward here to be carried out. It will be done in one of the most prestigious research centers in Spain, at the CIMA of the University of Navarra by Dr. Bruno Paiva. I need your help to spread it and share it. A friend has already published it in this link: https://forums.phoenixrising.me/thr...is-and-try-to-set-potencial-biomarkers.76208/
Hi Manuel, are you Manuel Ruiz Pablos - picture here https://solvecfs.org/bruno-paiva/?

Interesting project, well done.
 

FMMM1

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Yes, thank you very much. In this thread I talk about the project financed by Solve ME/CFS Initiative: https://forums.phoenixrising.me/thr...ed-immunodeficiency.76276/page-2#post-2242562
Hi I'm involved in an EU petition re funding for biomedical research. There's a thread on Science 4 ME. I use the same ID on Science 4 ME so you can contact me via that website if you wish to.
ME Action are sponsoring the petition. So you can contact me via that webpage as well.
I think the EU Commission will fund biomedical research in the near future; long overdue, they've funded Lyme research (5.8 million euros for a diagnostic test) but not ME research.
Hope project goes well.
Sent from my phone - so probably some errors.
 

FMMM1

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Hi @Manuel EU funding for research - understanding researchers perspective/needs

I posted here looking for help - https://www.s4me.info/threads/eu-pe...ding-for-me-research.10363/page-6#post-217951
Here's my post:
@Jonathan Edwards you're probably aware of the EU Funding under the "Marie Skłodowska-Curie Actions" [https://ec.europa.eu/research/mariecurieactions/node_en].

It seems to e.g. provide funding for scientists to work in other laboratories (possibly a researcher in the EU could work in a US laboratory). I'm trying to understand whether the Marie Curie program would be of use to researchers trying to progress ME research?


Anyone else who has contacts in the research community who could advise?

So if you (Manuel), or anyone else, could ask your contacts then that would be good:
Bruno Paiva (PhD) University of Navarra, Spain
Rosario Montero Mateo (MD), Aintzane Zabaleta Azpiroz (PhD), Diego Alignani (PhD), Idoya Rodriguez Serrano, Sonia Garate Luzuriaga