You probably have an autoimmune disease...

[Badpack]

@Learner1 a phase 3 Rituximab trial, where the placebo outweighed the responders by 10% would disagree with you.

 

[Learner1]

@Learner1 a phase 3 Rituximab trial, where the placebo outweighed the responders by 10% would disagree with you.

Rituximab helped me.

 

[sometexan84]

Not everyone with ME/CFS has autoimmunity. There is a subset of patients who do, however.

If you mean a "subset" that includes 90% of ME/CFS...

Antinuclear autoantibodies (ANA)
56.7% (34 of 60)
(2003) https://pubmed.ncbi.nlm.nih.gov/12851722/
68% (41 of 60)
(1996) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC507629/

Cardiolipin (an Antiphospholipid)
95% (38 of 40)
(2009) https://pubmed.ncbi.nlm.nih.gov/19623655/

Ganglioside antibodies (as seen in Guillain-Barre syndrome and others)
43% (18 of 42)
(1995) https://pubmed.ncbi.nlm.nih.gov/9392689/

Nuclear envelope autoantibodies
52% (31 of 60)
(1996) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC507629/

Antibodies to Serotonin or 5-hydroxytryptamine (5-HT)
62% (26 of 42)
(1995) https://pubmed.ncbi.nlm.nih.gov/9392689/
61.5% (72 of 117)
(2013) https://pubmed.ncbi.nlm.nih.gov/23664637/

Muscarinic acetylcholine receptor M1
53% (32 of 60)
(2003) https://pubmed.ncbi.nlm.nih.gov/12851722/

Antineutrophil cytoplasmic antibodies (ANCA)
47% (28 of 60)
(1997) https://pubmed.ncbi.nlm.nih.gov/9041942/

Small-Fiber Polyneuropathy associated Antibodies
52% (32 of 61)
(2020) https://www.sciencedirect.com/science/article/pii/S2666354620300727

The SFPN is what's mentioned in 1st post in the thread. I was wrong, it's 52%, much higher than what I initially put. They tested 61 ME/CFS, not 364 ME/CFS.​

​

And 32 tested positive for at least 1 of 4 autoantibodies, including antimuscarinic cholinergic receptor 4 (47%), anti-beta-2 adrenergic (27%), antimuscarinic cholinergic 3 (25%), and anti-beta-1 adrenergic (13%).​

​

They looked through medical records of 364 ME/CFS patients, looking through notes and what-not to determine those who might have autonomic dysfunction and possible Small-Fiber Polyneuropathy. They found 61, and that's who they actually tested for antibodies. So, that's how I messed up the stats in Post #1.​

Anyway, there are a lot more studies showing significant auto-antibodies in ME/CFS. Too many to list them all. And I'm sure there will be a lot more coming out soon.

 

[sometexan84]

I know about 10 people with me/cfs that had plasmapharesis without any improvement - Dr. Scheibenbogen very clearly has a financial motivation to find some kind of auto immunity in me/cfs.

I had a plasmapheresis. 7 in 10 days. Did nothing. I took Rituximab did nothing. This is with a high probability not an autoimmune disease.

@Learner1 a phase 3 Rituximab trial, where the placebo outweighed the responders by 10% would disagree with you.

Can I ask, were you two in the same trial?

And @bread. , were the (10) w/ ME/CFS you're referring to in the same trial as well?

Did they first test you for autoantibodies and/or diagnose you w/ autoimmune conditions? Or did they just trial plasmapheresis and rituximab on a group that said they had chronic fatigue?

I legitimately would like to know.

 

[Learner1]

If you mean a "subset" that includes 90% of ME/CFS...

Antinuclear autoantibodies (ANA)
56.7% (34 of 60)
(2003) https://pubmed.ncbi.nlm.nih.gov/12851722/
68% (41 of 60)
(1996) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC507629/

Cardiolipin (an Antiphospholipid)
95% (38 of 40)
(2009) https://pubmed.ncbi.nlm.nih.gov/19623655/

Ganglioside antibodies (as seen in Guillain-Barre syndrome and others)
43% (18 of 42)
(1995) https://pubmed.ncbi.nlm.nih.gov/9392689/

Nuclear envelope autoantibodies
52% (31 of 60)
(1996) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC507629/

Antibodies to Serotonin or 5-hydroxytryptamine (5-HT)
62% (26 of 42)
(1995) https://pubmed.ncbi.nlm.nih.gov/9392689/
61.5% (72 of 117)
(2013) https://pubmed.ncbi.nlm.nih.gov/23664637/

Muscarinic acetylcholine receptor M1
53% (32 of 60)
(2003) https://pubmed.ncbi.nlm.nih.gov/12851722/

Antineutrophil cytoplasmic antibodies (ANCA)
47% (28 of 60)
(1997) https://pubmed.ncbi.nlm.nih.gov/9041942/

Small-Fiber Polyneuropathy associated Antibodies
52% (32 of 61)
(2020) https://www.sciencedirect.com/science/article/pii/S2666354620300727

The SFPN is what's mentioned in 1st post in the thread. I was wrong, it's 52%, much higher than what I initially put. They tested 61 ME/CFS, not 364 ME/CFS.​

​

And 32 tested positive for at least 1 of 4 autoantibodies, including antimuscarinic cholinergic receptor 4 (47%), anti-beta-2 adrenergic (27%), antimuscarinic cholinergic 3 (25%), and anti-beta-1 adrenergic (13%).​

​

They looked through medical records of 364 ME/CFS patients, looking through notes and what-not to determine those who might have autonomic dysfunction and possible Small-Fiber Polyneuropathy. They found 61, and that's who they actually tested for antibodies. So, that's how I messed up the stats in Post #1.​

Anyway, there are a lot more studies showing significant auto-antibodies in ME/CFS. Too many to list them all. And I'm sure there will be a lot more coming out soon.

I'm referring to Jarred Younger's studies where he found an infectious subset and an autoimmune subset.

 

[sometexan84]

I'm referring to Jarred Younger's studies where he found an infectious subset and an autoimmune subset.

That's like describing subsets of blue and red.. in purple

 

[sometexan84]

If you're interested in learning more about the possibility of infection + autoimmunity in ME/CFS, this article is excellent.

Infection Elicited Autoimmunity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Explanatory Model

It's from 2018, and is by far the best article that describes what I think is the foundation of this complicated condition.

Sadly, Dr. Jonas Blomberg (who put this together) passed away in 2019. I feel like he was closer to understanding the entire pathogenesis of ME/CFS than anyone.

His partner, Dr. Jonas Bergquist is now one of very few looking into autoimmunity in ME/CFS. I emailed him hoping to nudge him in a good direction research-wise, and was very disappointed when I received a response that included "I am not very familiar with Parvovirus B19"....

At any rate, check out the article. There are only a couple of small things in the article I don't agree with. But this was done in 2018, and much has changed to be fair. 90%+ I think is pretty spot on.

 

[Badpack]

@sometexan84 your thread is 1 week old, here is me saying that autoimmune therapy didnt work for me 6 months ago

https://forums.phoenixrising.me/threads/short-summary-of-meds-i-tried-by-now.80341/#post-2278837

 

[Learner1]

If you're interested in learning more about the possibility of infection + autoimmunity in ME/CFS, this article is excellent.

Infection Elicited Autoimmunity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Explanatory Model
...
At any rate, check out the article. There are only a couple of small things in the article I don't agree with. But this was done in 2018, and much has changed to be fair. 90%+ I think is pretty spot on.

While this no doubt explains some cases, thus seems to be a mighty convenient stringing together of a mishmash of ME/CFS research.

it doesn't cover the metabolomics research done by multiple researchers, patients with spinal issues, and many of the "facts" it lifts from papers might be true for some patients but certainly not for all. For example, my homocysteine tends to run LOW, not HIGH, only a couple of cytokines if the many match the chart provided, and many of us did not have our illness initiated from a viral illness.

That said, I do believe more if us have an autoimmune component than our doctors think, simply because autoimmunity is Actually pretty common and our doctors haven't bothered to look.

 

[sometexan84]

While this no doubt explains some cases, thus seems to be a mighty convenient stringing together of a mishmash of ME/CFS research.

I wasn't sharing that article to show proof of anything. I think there's better proof elsewhere, some of which I've shared. The broad ideas in that article are what I wanted to share for those interested.

I repeat, the article is just to reference an idea, not really to prove that idea.

I appreciate the outside-the-box thinking in the article. I think it's a nice hypothesis for how the pieces all fit together. I think it's very unassuming.

If you want to see more detailed cytokine info, then go here - https://me-pedia.org/wiki/Cytokine#Table_of_Cytokines. It took me a long time to put that together. And it still won't fit it w/ everyone.

and many of us did not have our illness initiated from a viral illness

Doesn't have to be viral. I think multiple infections are involved in most cases, and not necessarily persistent infections.

 

[stefanosstef]

Phospholipid autoantibodies in ME/CFS patients and antibodies against cardiolipin were described in 92–95% of ME/CFS patients in two studies.
https://www.sciencedirect.com/science/article/pii/S1568997218300880
View attachment 40935

This seems crazy, never seen anything close to that for ME/CFS.I'm gonna check for these the next days.

 

[sometexan84]

Let us know! I'd be sure and check for Phosphatidylserine antibodies as well (I tested positive for this).

 

[stefanosstef]

antiphospholipid antibodies IgG and IgM and cardiolipin antibodies IgG IgM are all negative for me

 

[sometexan84]

antiphospholipid antibodies IgG and IgM and cardiolipin antibodies IgG IgM are all negative for me

Did you test for Phosphatidylserine? And beta 2 glycoprotein? And the Lupus anticoagulant?

I have tested for many autoantibodies that I thought I was likely to have. I only receive an abnormal result about 20% of the time.

 

[stefanosstef]

Did you test for Phosphatidylserine? And beta 2 glycoprotein? And the Lupus anticoagulant?

I have tested for many autoantibodies that I thought I was likely to have. I only receive an abnormal result about 20% of the time.

no, unfortunately only for those 2 because according to the study on the page 2 they are positive on 90+% of cfs patients.Are they often positive for us too?I mean, on what basis would I convince my doctor to order those too?

Edit:Actually the test reads like this:
Cardiolipin antibodies IgG negative
Cardiolipin antibodies IgM negative
anti-phoshpjatidylserine IgG negative
anti-phosphatidylserine IgM negative

So those 2 last you mentioned arent tested.According to the criteria I found at least one of those should get tested too...

 

[sometexan84]

Are they often positive for us too?I mean, on what basis would I convince my doctor to order those too?

To my knowledge, LA, beta 2 glycoprotein, and prothrombin haven't thus far been directly linked to ME/CFS. These types of Phospholipid antibodies just parallel w/ symptoms of ME/CFS - https://www.healthrising.org/blog/2...ts-chronic-fatigue-syndrome-and-fibromyalgia/

Unfortunately, (aside from maybe some of the neurotransmitter receptors) they're not finding "ME/CFS-specific" antibodies. They're not finding any "Long-COVID-specific" antibodies either. They're simply finding higher auto-antibodies in ME/CFS and Long-COVID than in healthy people.

All you can do is tell your doctor how a certain test relates to your symptoms. Here are some antibodies they've found in ME/CFS.

Here are others found in ME/CFS that aren't mentioned above....

• TPO
• ANA
• Lamin B1 (involved in epigenetic chromatin regulation)
• Microtubule-associated protein 2 (MAP2)
• Sa (Vimentin) (62 kDa)
• Glial Fibrillary Acidic Protein (GFAP)
• Phosphatidylinositol (PI)
• 68/48 kDa protein (I think 68 kd is HSP-70, could also be a Signal Recognition Particle)
• Neoepitopes (class of major histocompatibility complex, MHC)
• Antineutrophil cytoplasmic antibodies (ANCA)
• Oxidized LDL (oxLDL) (formed by excessive free radicals)
• Lipopolysaccharides

 

[sometexan84]

I've also been documenting the auto-antibodies people have in this forum. I haven't logged a ton yet (I just document them when I see them).

I think the fact that the antibodies are so spread out is... well, important to note.

I'm not putting anyone's username, just the raw numbers of people. (I only have usernames in my personal notes so I don't mess up the counts...)

If you've tested positive for auto-antibodies, please let me know. I plan on sharing all of my research to everyone on here at some point.

Autoantibodies in forum…

AChR Binding Antibodies
1x
Carbonic Anhydrase VI
1x
Myelin
2x
Basal Ganglia
1x
Myocardial Peptide
1x
N-Type Calcium Channel
1x
Beta 1 Receptor
2x
Beta 2 Receptor
5x
Alpha-1 adrenergic receptor
12x
Alpha-2 adrenergic receptor
5x
Acetylcholine ganglionic receptor
1x
Phosphatidylserine
1x
Endothelin-Receptor-A (ETAR)
7x
Angiotensin-II-Receptor-1 (AT1R)
6x
Muscarinic cholinergic (M1) receptor
1x
Muscarinic cholinergic (M2) receptor
3x
Muscarinic cholinergic (M3) receptor
2x
Muscarinic cholinergic (M4) receptor
7x
NMDA
1x
Parotid Specific Protein (PSP)
1x
Dopamine Receptor 1
1x
Tubulin
1x
Phospholipid
1x
Gliadin
3x
Cardiolipin
1x
ANA
4x
Scl-70 (topoisomerase)
1x
SS-A/Ro
1x
TPO
3x
Saccharomyces cerevisiae
1x
CCP (cyclic citrullinated peptide)
1x
Parietal Cell
1x
Smooth Muscle
2x
GAD65
1x
Jo-1
1x
Proliferating cell nuclear antigen (PCNA)
1x
Heart mitochondria (anti-M7)
1x

 

[Krokus]

Can you add me:
CCP,
GABA B
m4 AChR
m3 AChR
beta 1 receptor
alpha 1 adrenergic receptor
alpha 2 adrenergic receptor

Thank you for your work!

 

[sometexan84]

Can you add me:
CCP,
GABA B
m4 AChR
m3 AChR
beta 1 receptor
alpha 1 adrenergic receptor
alpha 2 adrenergic receptor

Thank you for your work!

Thank You!!!! For real, that is so helpful and it saves so much time . If I had a breakdown like that from everyone, I'd have a comprehensive list to share in no time!

I actually had some of yours documented already. Some I didn't, and they are updated (along w/ some others) in BLUE below. I also updated some of the names and info.

Autoantibodies in forum…

AChR Binding (acetylcholine receptor)
1x
Carbonic Anhydrase VI (CA VI) – Early Sjogren's Syndrome
1x
Myelin
2x
Basal Ganglia (ABGA)
1x
Myocardial Peptide
1x
Voltage-Gated Calcium Channel, N-Type (VGCC) - Lambert-Eaton myasthenic syndrome
1x
Beta-1 Adrenergic Receptor (β1AR) - Dilated cardiomyopathy
2x
Beta-2 Adrenergic Receptor (β2AR)
6x
Alpha-1 Adrenergic receptor (α1AR)
14x
Alpha-2 adrenergic receptor (α2AR)
5x
Ganglionic (alpha-3) Acetylcholine receptor (α3-AChR) - Autoimmune autonomic ganglionopathy
1x
Phosphatidylserine - Antiphospholipid Syndrome
1x
Endothelin-Receptor-A (ETAR)
7x
Angiotensin-II-Receptor-1 (AT1R)
7x
Muscarinic acetylcholine receptor, M1 (mAChR)
1x
Muscarinic acetylcholine receptor, M2 (mAChR)
5x
Muscarinic acetylcholine receptor, M3 (mAChR) - Primary biliary cholangitis/cirrhosis
3x
Muscarinic acetylcholine receptor, M4 (mAChR)
9x
N-methyl-d-aspartate (NMDA) receptor - (NMDA) Receptor Encephalitis
1x
Parotid Specific Protein (PSP) - Early Sjogren's Syndrome
1x
Dopamine Receptor 1 (DRD1)
1x
Tubulin
1x
Phospholipid - Antiphospholipid Syndrome
1x
Gliadin - Celiac disease
3x
Cardiolipin (aCL) - Antiphospholipid Syndrome
3x
ANA (Antinuclear Antibodies) - Lupus, Scleroderma, Sjögren's syndrome, Rheumatoid arthritis, etc
9x
Scl-70 (topoisomerase) - Scleroderma, Connective Tissue Disease
1x
SS-A/Ro (Sjögren's-syndrome-related antigen A) - Sjögren's-syndrome
3x
TPO (Thyroid peroxidase) - Hashimoto's
11x
Saccharomyces cerevisiae (ASCA) - Crohn's Disease
1x
CCP (cyclic citrullinated peptide) - Rheumatoid arthritis
3x
Parietal Cell - Pernicious anemia
3x
Smooth Muscle (SMA) - Primary biliary cholangitis, Autoimmune hepatitis
2x
GAD65 (glutamic acid decarboxylase 65) - Type 1 Diabetes
1x
Jo-1 (Anti-histidyl tRNA synthetase) - Myositis
1x
Proliferating cell nuclear antigen (PCNA)
1x
Mitochondrial (M7) (<< heart) - Myocarditis
1x
GABABR (gamma-aminobutyric acid B receptor) - GABABR encephalitis
1x
Salivary Protein 1 (SP-1) - Early Sjogren's Syndrome
1x
Thyroglobulin (TgAb) - Hashimoto's
4x
Beta-2-Glycoprotein I (β2GPI) - Antiphospholipid Syndrome
2x
Rheumatoid Factor
2x
Neurofilament
1x
RNP (Ribonucleoprotein)
1x

 

[crypt0cu1t]

Thank You!!!! For real, that is so helpful and it saves so much time . If I had a breakdown like that from everyone, I'd have a comprehensive list to share in no time!

I actually had some of yours documented already. Some I didn't, and they are updated in BLUE below. I also updated some of the names and info

Autoantibodies in forum…

AChR Binding (acetylcholine receptor)
1x
Carbonic Anhydrase VI (CA VI) – Early Sjogren's Syndrome
1x
Myelin
2x
Basal Ganglia (ABGA)
1x
Myocardial Peptide
1x
Voltage-Gated Calcium Channel, N-Type (VGCC) - Lambert-Eaton myasthenic syndrome
1x
Beta-1 Adrenergic Receptor (β1AR) - Dilated cardiomyopathy
2x
Beta-2 Adrenergic Receptor (β2AR)
5x
Alpha-1 Adrenergic receptor (α1AR)
12x
Alpha-2 adrenergic receptor (α2AR)
5x
Ganglionic (alpha-3) Acetylcholine receptor (α3-AChR) - Autoimmune autonomic ganglionopathy
1x
Phosphatidylserine - Antiphospholipid Syndrome
1x
Endothelin-Receptor-A (ETAR)
7x
Angiotensin-II-Receptor-1 (AT1R)
6x
Muscarinic acetylcholine receptor, M1 (mAChR)
1x
Muscarinic acetylcholine receptor, M2 (mAChR)
3x
Muscarinic acetylcholine receptor, M3 (mAChR) - Primary biliary cholangitis/cirrhosis
3x
Muscarinic acetylcholine receptor, M4 (mAChR)
7x
N-methyl-d-aspartate (NMDA) receptor - (NMDA) Receptor Encephalitis
1x
Parotid Specific Protein (PSP) - Early Sjogren's Syndrome
1x
Dopamine Receptor 1 (DRD1)
1x
Tubulin
1x
Phospholipid - Antiphospholipid Syndrome
1x
Gliadin - Celiac disease
3x
Cardiolipin (aCL) - Antiphospholipid Syndrome
1x
ANA (Antinuclear Antibodies) - Lupus, Scleroderma, Sjögren's syndrome, Rheumatoid arthritis, etc
4x
Scl-70 (topoisomerase) - Scleroderma, Connective Tissue Disease
1x
SS-A/Ro (Sjögren's-syndrome-related antigen A) - Sjögren's-syndrome
1x
TPO (Thyroid peroxidase) - Hashimoto's
3x
Saccharomyces cerevisiae (ASCA) - Crohn's Disease
1x
CCP (cyclic citrullinated peptide) - Rheumatoid arthritis
2x
Parietal Cell - Pernicious anemia
1x
Smooth Muscle (SMA) - Primary biliary cholangitis, Autoimmune hepatitis
2x
GAD65 (glutamic acid decarboxylase 65) - Type 1 Diabetes
1x
Jo-1 (Anti-histidyl tRNA synthetase) - Myositis
1x
Proliferating cell nuclear antigen (PCNA)
1x
Mitochondrial (M7) (<< heart) - Myocarditis
1x
GABABR (gamma-aminobutyric acid B receptor) - GABABR encephalitis
1x

Don't forget Salivary Protein 1 antibodies and an elevated ESR/CRP in my case!