ME/CFS stopped with outbreak of autoimmune disease

[Gingergrrl]

@MartinDH Your story is very interesting and I am following your thread even though I have nothing useful to add! My illness started off viral but ended up extremely autoimmune. I have never had psoriasis but my maternal grandmother did and am now wondering if there is some connection?

 

[Martin aka paused||M.E.]

@MartinDH Your story is very interesting and I am following your thread even though I have nothing useful to add! My illness started off viral but ended up extremely autoimmune. I have never had psoriasis but my maternal grandmother did and am now wondering if there is some connection?

Pardon, what do you mean with "ended up extremely autoimmune"?

Autoimmune diseases are inheritable. In patients with autoimmune diseases there is a common coincidence with other autoimmune diseases as comorbidities. What breaks out (psoriasis, MS, RA) is only the tip of the iceberg of an underlying illness "auto immunity", I think. So ME might be an autoimmune disease as well, but without serious inflammation going on and as a consequence there aren't these irreversible damages like in MS and RA.

I know here is a professor on the board who knows it better and would probably disprove this thesis ;-) But for me, while I'm having a heavy cold I haven't experienced for years know, my ME symptoms are better. Ergo: The "switch" we are searching for seems to be in the immune system.

 

[pattismith]

I had a quick look tonight as my brain was back,

according to the few articles I read, Treg are exhausted in ME (and also MS), but they are activated in Psoriasis:

"The pattern of raised IL-2 levels and chronic immune activation with disrupted homeostasis [169,170] coupled with raised levels of Treg cells seen in patients with ME/CFS strongly suggests Treg cell exhaustion as a feature of this disease as well."

and

"In their current article, Bovenschen et al. demonstrate that regulatory T cells (Tregs) in psoriatic patients can differentiate toward IL-17-expressing Tregs. The investigators suggest that the combination of psoriatic Treg dysfunction (Sugiyama et al., 2005) and a propensity for differentiating into IL-17-producing regulatory cells contributes to the perpetuation of chronic autoimmunity"

So it maybe that Treg exhaution in ME prevents their shift into Th17 observed in Psoriasis

I wanted to add this interesting study that shows: "Inhibition of OXPHOS impaired both Tcon and Treg cell function compared to wild-type cells but disproportionally affected Treg cells.
These findings provide a novel approach to increase Treg function and give insights into the fundamental mechanisms by which mitochondrial energy metabolism regulates immune cell functions in vivo."

To me it means that your psoriasis can only show up when your Treg are able to activate, and ME/CFS appear to deactivate your Treg. ME/CFS may be a cure to your Psoriasis (reverse is not true).

 

[MEMum]

Jim,

oh god, why did I become a lawyer and not a doctor. But if you want to get psoriasis, then I highly recommend getting a streptococcal infection as it is the major trigger for this disease... best way to find out if you one of the lucky ones.

But I think there really is a direct link. Does anyone know if there are studies about the coincidence of ME and autoimmune diseases in patients?

And I think what is really important about my experience is: The whole ME-symptoms disappeared, not only the flu-like feeling.

The Norwegian oncologists carrying out the Rituximab trial found that 40% of first degree relatives of people with ME had an autoimmune disease. This is prob in their Dec 2016 paper where they mention ME patients having antibodies to the pyruvate dehydrogenase complex. (Fluge and Mella)
My daughter has ME and her older brother has Type 1 diabetes.She also has autoantibodies to the pyruvate kinase receptors in the basal ganglia. (Post strep)
There is also a significant overlap of ME and POTS and hypermobility. German studies have found antibodies to autonomic neurotransmitters, which could theoretically affect orthostaic intolerance.
In addition a significant no of people with ME go on to develop Hashimoto's thyroiditis....

 

[MEMum]

In addition several people have reported that their ME symptoms improve in pregnancy. This is linked to better immune tolerance to the baby.

 

[Martin aka paused||M.E.]

@MEMum
How interesting this is!
In a few days I will meet one of the doctors who worked with Carmen Scheibenbogen at the Charité in Berlin. I think she is the author of the study you mention. I will ask him about this. Thank you!

 

[MEMum]

Good luck with your appointment.

 

[Mithriel]

Thank you @Learner1 for this long answer!
But I'm not convinced that there is inflammation, or let's say: more than a normal body produces every day, a pathologic inflammation. Because in all autoimmune diseases, chronic inflammation leads to irreversible damage. You can see that with MS (people can't walk again), Rheumatic Arthritis (joints won't work again), Psoriasis (skin loses it's pigments and will stay white where chronic inflammation was) and so on... But in the cases of full remission in ME: People are fully recovered and don't have any limitations.

In MS people do recover completely from flares. I knew one woman who was paralysed and in hospital for 6 months in her 20s but then was able to walk out (as often happens) but then she never had another attack until she had a triple heart bypass in her 60s.

One theory of MS is that everyone is different but there comes a point when the body can't compensate any more and they all become severely disabled in a similar way except in many people, they age and die before they reach that point.

It doesn't seem very different from ME.

Personally, I think that our damaged aerobic system means that any part of the body can go wrong, especially those which have high energy needs. Because our biology works by homeostasis (as soon as a procedure starts there is a process for ending it) any flaw can push us either way depending on whether it is the push or the pull part which is most off balance if you see what I mean. So we get too hot if the cooling system is having to work harder than the energy available to it or we get to cold because that is pushed into anaerobic respiration.

I also have a lot of inflammation with hot swollen fingers and muscles and tendons that are sore to the touch. (Though because of the energy deficit reactions which should happen don't work efficiently. For instance ME people tend not to faint during tilt table testing even though it is a protective mechanism to stop the brain being damaged by a lack of oxygen. I suspect that a lot of our tests come back low because of this, but that is another discussion)

 

[Wishful]

I have rosacea, and it's linked to my ME/CFS severity too. When ME/CFS is bad, my rosacea is worse, and clears up again when the ME/CFS symptoms subside again. Just another link between the immune system and ME/CFS.

 

[Learner1]

I have rosacea, and it's linked to my ME/CFS severity too. When ME/CFS is bad, my rosacea is worse, and clears up again when the ME/CFS symptoms subside again. Just another link between the immune system and ME/CFS.

Might you have MCAS, mast cell activation syndrome?

https://www.rosacea.org/weblog/are-mast-cells-missing-link-rosacea-triggers

There are many drugs that are used, but supplements, such as B5, folate, B12, vitamin C, curcumin, boswellia, quercetin, Turin, and luteolin can be very helpful, too.

 

[Martin aka paused||M.E.]

I have rosacea, and it's linked to my ME/CFS severity too. When ME/CFS is bad, my rosacea is worse, and clears up again when the ME/CFS symptoms subside again. Just another link between the immune system and ME/CFS.

I'm sorry to hear that. As far as I know rosacea is one of the toughest and most treatment-resistent skin diseases. Seborrheic Dermatitis has also been resistant to anything I tried until I found this blog: https://simpleskincarescience.com This guy is a genius. My skin is 95% clear since I'm following his protocols. Maybe you can find something about your condition there too.

@Mithriel : OK, might be possible. But I think it's no secret that MS patients often have irreversible nerve damages... Haven't heard about such a thing in ME patients after total remission. And you're right: we are sensitive and can always experience relapses due to any trigger one can imagine. But that is no irreversible damage, I think, but a type of gene expression in ME patients. Otherwise there would be no possibility of total remission.

 

[Gingergrrl]

Pardon, what do you mean with "ended up extremely autoimmune"?

Sorry, I should have explained that better and realize that sounded stupid how I phrased it! My illness started off viral from severe mono/EBV and I felt "sick" for a long time. But within 3 yrs, it shifted into autoimmunity. I was very quickly diagnosed with Hashimoto's and I have not had a traditional cold, flu, or fever since Jan 2013.

By 2015, I developed severe MCAS/allergic reactions and in 2016, we learned that I had several autoantibodies. We tested further and I ended up having eleven autoantibodies (including the two Hashi's) so we stopped testing and I began trying to reduce them with high dose IVIG and later (currently) with Rituximab.

In patients with autoimmune diseases there is a common coincidence with other autoimmune diseases as comorbidities.

That is what we found in my case with Hashimoto's, Autoimmune POTS, and the calcium autoantibody that correlates with LEMS disease, etc.

Ergo: The "switch" we are searching for seems to be in the immune system.

I agree with this.

The Norwegian oncologists carrying out the Rituximab trial found that 40% of first degree relatives of people with ME had an autoimmune disease. This is prob in their Dec 2016 paper where they mention ME patients having antibodies to the pyruvate dehydrogenase complex. (Fluge and Mella)

@MEMum That is so interesting and I have no first degree relatives with autoimmune disease. What symptoms would autoantibodies to the "pyruvate dehydrogenase complex" produce?

 

[Martin aka paused||M.E.]

@Gingergrrl

That's very interesting. There is a Rituximab thread where you talk about your experience and it seems to work for you?!
I find this Rituximab discussion really really confusing. If I got Mr. Edwards right then he thinks that the Phase III study will probably show that it doesn't work better than the placebo because he isn't convinced that Rituximab can be of any help in ME. Unfortunately it is our biggest hope. And as Norway is in the European Economic Community an approval in Norway would lead to an approval in Germany too... *thumps pressed*.

I have been tested for Hashimoto and I am still waiting for the results... But the treatment of Hashimoto didn't help you?

 

[Wishful]

My rosacea is mild, and since I don't have a social life, it's just not an issue. Since the immune system problems with ME/CFS is the main trigger for it, I don't see any point in pursuing 'perfect skin' until the underlying cause is treated.

 

[Gingergrrl]

That's very interesting. There is a Rituximab thread where you talk about your experience and it seems to work for you?! I find this Rituximab discussion really really confusing. If I got Mr. Edwards right then he thinks that the Phase III study will probably show that it doesn't work better than the placebo because he isn't convinced that Rituximab can be of any help in ME. Unfortunately it is our biggest hope. And as Norway is in the European Economic Community an approval in Norway would lead to an approval in Germany too...

It is all very interesting to me, too, and so far Rituximab has helped me and I will be continuing with the maintenance infusions for the full 12 months (or whatever is recommended by my doctor). I am not sure why (or if?) Dr. Edwards said that he does not think the Phase III study will probably show that Ritux doesn't work any better than placebo and I don't think anyone knows the results yet, unless I am mistaken. I also don't know anything about how it works in the EU vs. the US but I was able to get insurance approval for autoimmunity and we did not use an ME/CFS diagnosis in my case.

I have been tested for Hashimoto and I am still waiting for the results... But the treatment of Hashimoto didn't help you?

When I was first diagnosed with Hashimoto's in Oct 2013, I was started on a low dose of Armour Thyroid. It initially improved all of my symptoms and brought my TSH, T3, T4, etc, into normal range (although the two Hashi's autoantibodies remained high and probably always will).

But after a few months, my symptoms not only returned but got worse and it was very clear that something was seriously wrong with me in addition to having Hashimoto's (but I was not yet officially diagnosed with POTS or anything else that was to come later ). By Feb 2014, I went on the final medical leave from my 16 year career and never returned.

I still take Armour Thyroid every morning, and it keeps my TSH and other numbers in the normal range, but I consider it only a small piece of the puzzle. Multiple doctors told me that having Hashi's is like the "gateway" to other autoantibodies/ autoimmune diseases and in my case, they were completely right.

 

[pattismith]

@Mithriel : OK, might be possible. But I think it's no secret that MS patients often have irreversible nerve damages... Haven't heard about such a thing in ME patients after total remission. And you're right: we are sensitive and can always experience relapses due to any trigger one can imagine. But that is no irreversible damage, I think, but a type of gene expression in ME patients. Otherwise there would be no possibility of total remission.

some MS patients can have remissions, it is a very capricious disease for a majority of patients.
However, I don't know if RMI damages are still observable after a remission occurs...

The 4 Types of MS

• Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear2
• Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point3
• Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions2
• Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery2

 

[heapsreal]

But if you want to get psoriasis, then I highly recommend getting a streptococcal infection as it is the major trigger for this disease

Others may confirm it but there was a streptococcal vaccination that helped mecfsers years back but this vaccine is no longer available. There was a dr who was a big proponent of this who has cfsme himself. He would take the vaccine regularly but can recall if it was taken in weeks or months apart.

I may have the wrong vaccine altogether but even so it did improve his cfs greatly possibly by altering his immune system??

 

[Learner1]

some MS patients can have remissions, it is a very capricious disease for a majority of patients.
However, I don't know if RMI damages are still observable after a remission occurs...

The 4 Types of MS

• Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear2
• Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point3
• Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions2
• Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery2

And this:

https://www.hindawi.com/journals/ipid/2010/273573/

 

[Martin aka paused||M.E.]

@Gingergrrl But you are not one of the lucky "total remission patients" on Rituximab?!
@Learner1 Ah okay...

 

[Gingergrrl]

@Gingergrrl But you are not one of the lucky "total remission patients" on Rituximab?!

I am definitely not a "total remission" patient yet (and do not know if I ever will be). But my doctor, in additional to anecdotal reports, said that many people get the maximum benefit at the six month mark, and I am only at the three month mark, so it is still possible for me to have additional improvements, beyond those that I have already had.