[tauberian77]

In my case, the CFS like syndrome was all in my head in the worst fashion possible. After COVID, I developed a cross reactive species of antibody targeting my hippocampus and the opioid receptors in my brain. I have been bedridden since I was 17. I also manifested severe orthostatic intolerance and peripheral neuropathy that put me in the lowest 1 percent of neurite density. I was diagnosed at Mass General Hospital at a specialty clinic, so I trust the veracity of their claims.

The problem with CFS is simply that it is a syndrome. It is far too nebulous a label to be of much use. It describes everything because it describes nothing! I have an autoimmune disorder that debilitates me. I don't particularly care if it is labeled as CFS or small fiber neuropathy. @lindsaywaterman, I am curious about collecting a body of documents on my illness; I would be greatly appreciative if you could contribute your professional experiences dealing with CFS patients whether it began with an illness or was simply an unrelated psychological condition lumped in the same category on account of a superficial similarity in symptoms.

[doingtheiroming]

Auto Immune Disorder (IBD in my case) sufferer here. I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body (GI in my case) where the immune system is causing most damage at a given moment who will ask questions about other symptoms that we now have a good idea are likely the result of the same inflammation (depression, joint pain, peripheral neuropathy, CFS, etc. etc. etc.) but at no point, is there a department of immunology that takes over or even contributes.

I've worked my way through azathioprine (poisons your bone marrow to reduce white blood cell count - great for getting skin cancer) to vedolizumab which targets a single gut immune system signaling molecule. I'm lucky in that both have induced full remission which means all the inflammation related symptoms go away, not just the colitis. But I know many people who aren't that lucky and who get some symptoms controlled while others continue unabated. And then there are folk like you who seem to get nothing.

The immune system in complex in the proper sense but we still treat the problems it causes reductively. Worse, most of the research that is done treats it reductively also. If COVID had a silver lining it was that it seemed immune system research got a couple of decades of research done in two years. But when I'm talking to my GI, I really feel that nothing has changed and that at some point, I'm going to flare again, get deeply depressed, be unable to move properly or exercise, lose feeling in my toes and after the steroids have ruined me a bit more, I'll be stuck on a new IBD drug and will hope for the best.

We need these diseases to be treated systemically, as a class and for the immune system to have it's own specialists in research and treatment. They would be able to act as sherpas for sufferers but more importantly, would be a point of nucleation for new ideas about the immune system since they would be exposed to the gamut of problems sufferers face.

It makes me angry, which is probably a flare-risk factor...

[jassyr]

>I sometimes wonder why we're all not more annoyed that we get sent to specialists for the parts of our body . . . . at no point, is there a department of immunology that takes over or even contributes.

As a person with Multiple Sclerosis seeing a neurologist I have been wondering this very thing since my diagnosis. I am on a B-cell depleting drug. It feels silly talking to my neurologist about my B cells. Lots of tests to determine neurological function, but very little tests done on immune function.

[doingtheiroming]

I'm sure you're awayre that lots of evidence now that MS and many other AI diseases are caused / induced by acute or chronic viral infections:

https://med.stanford.edu/news/all-news/2022/01/epstein-barr-...

It really feels at this point that not by connecting these diseases together and treating them as a class, we're missing the woods for the trees. Sadly, all of the economic incentives are to keep treating them separately and reductively because chronic diseases are great long-term revenue generators. TBC, I'm not attacking the drug companies here (UC was a killer until pred was discovered in the 1950s and Vedolizumab is working fantasically well for me) but we need the immune system to be treated as genuine clinical and research discipline to really cure these things.

My last UC flare was preceeded by a bout of shingles which is caused by an opportunistic latent virus. My doctors always talk of my immune system as being over-active. It really seems to me that it's more the immune system becoming disordered - which latent viruses play a major role in. My docs aren't remotely interested in having that discussion because it doesn't involve the details of gut epithelial cells. Fascinating as they are, I don't think we're going to cure UC or any other AI disease by focusing on them.

[jassyr]

There is very convincing research that Epstein Barr Virus causes Multiple Sclerosis, and the current treatment I am on for MS destroys the B-Cells the latent virus lives in. I think you're spot on, infections are probably the cause of most of these auto-immune diseases.

In MS we're getting closer to finding the cause and ultimately the cure. It does take a while for research to get funneled to the right person with the right specialty and right funding -- sometimes years, decades.

I'm not sure tying the diseases together would be a winning strategy...? My MS could be caused by the EBV living in B-Cells and a genetic or environmental (or both) trigger. Your UC may be caused by a certain bacteria living in your gut triggering a T-Cell response by a different genetic or environmental element.

And yeah, the doctors don't want to hear my pet theories. hah. I have done my own labs, brought them in, and the doctor just gives me a condescending look like - why are you even trying? I guess they don't know how desperate most of us are for answers.

[haldujai]

> There is very convincing research that Epstein Barr Virus causes Multiple Sclerosis

Eh, the strongest evidence is one large study from last year of 10 million military personal followed for 20 years that identified ~800 total cases with a hazard ratio of 32 for EBV seropositivity.

There’s strong evidence of an association but I don’t think the causation question is answered. The challenging thing to reconcile is how low the incidence of MS is despite 90% EBV seropositivity in healthy controls (99-100% in MS).

[nso]

Ocrevus? How's it treating you?

I've been on Fingolimod Accord (generic Gilenya) for a year, Gilenya for 8-9 years, and before that Rebif for like 13 years? Medicated at 18, ill since 12. Never felt better really. Symptom free and side-effect free.

The Rebif was kicking my ass with its side effect, I attribute my constant intrusive suicidal thoughts during that time to the medicine, but other than a lower-than-normal heart rhythm I am a very happy user of my current medication.

[jassyr]

After 3 years of Ocrevus I'm switching to Kesimpta this week. I've had too many infections with Ocrevus and I'm hoping the lower dose with Kesimpta will help. I had laryngitis for a few weeks, Covid for a few weeks, other little things too, and have had to miss work as a result. Otherwise Ocrevus has been amazing for my MS!

I was diagnosed almost 15 years ago and doing fairly well. I skipped the 'CRAB' drugs specifically because of the depression/suicide risk. Being already at risk for those things I thought the negatives far outweighed the positives -- personal choice.

So glad Gilenya is working for you! Some of the new drugs are quite amazing.

[spondylosaurus]

Hey, fellow IBD/autoimmune sufferer here!

By chance, have you seen a rheumatologist? I got diagnosed with spondylitis first and Crohn's second, so I took the rheumatologist > gastroenterologist path, and a rheumatologist sort of does what you describe about systemic immune monitoring.

Not perfectly, to be fair. And rheumatology is a criminally overlooked and understaffed specialty. But my rheumatologist has been really good at helping me tie together various issues that seemed unrelated but actually shared a root cause. And, immune problems being what they are, I'd wager most of his patients are in a similar boat, so the whole "let's figure out why your guts are bad AND your joints hurt AND your skin is awful AND... etc" thing is business as usual on his end.

[doingtheiroming]

I've never seen a rhematologist. It does feel like the specialism that's closest to immunology. My docs always ask about joint pain and there's certainly overlap between arthritis and other inflammatory diseases like UC. My grandmother had terrible arthritis and as it tends to be more common in women, it seems likely that's the reason rheumatology in general is overlooked and understaffed. Biologics like Infliximab started out as arthritis treatements and were re-purposed as IBD treatmetns (generally more useful for UC than Crohns).

A friend who was recently diagnosed with UC (but with many other obviously AI symptoms / conditions) has managed to get himself referred to a Rheumatologist which is almost certainly a good thing.

But regardless of how good a rheumatologist might be at dealing with it, it isn't a fix for the issue that the immune system isn't treated as a first class citizen in medicine.

[sgtnoodle]

I'm curious about the small fiber neuropathy in your toes you mentioned. I was diagnosed with severe sarcoidosis a few years ago, and am currently taking azathioprine along with adalimumab. As far as I know the suppression is working regarding the sarcoidosis, although I've been having trouble with viral infections lingering a long time. Recently I've been noticing some burning and numbness in my toes, and your post made me realize it's most certainly nerve related.

[doingtheiroming]

Neuropathy is not a serious issue for me, but like depression, eczema and the rest it's something that I get as either as a co-symptom in a flare or a signal that a flare is coming. The docs like to use c-reactive protein as a biomarker, but I tend to find it's a trailing indicator of problems. I start expecting a flare when the subsidiary symptoms appear (eczema etc.) as they tend to be leading indicators. The problem is that because my GIs are only really interested in GI symptoms, they see those things as unrelated until the GI symptoms appear.

Other folk I know with AI diseases have seen similar patterns and have for example seen improvements to things like PN when they went on anti-inflammatory drugs (5-ASA in the case of one friend) which were prescribed for UC.

I don't think the PN was caused by the Azathioprine. I have always felt it was a co-sypmption that I get as a "bonus" when the colitis flares.

[pixl97]

> is there a department of immunology that takes over or even contributes.

Because we don't see the immune system as the organ it is. Which is odd that things like vaccines are effectively medicines for that organ.

But at the end of the day we still don't know 'that much' about the immune system because of its extreme complexity. It's still very difficult or impossible to target a bad acting immune response in an individual without disabling all the immune system (and yea, this puts you at a lot of risk).

I like the series that Kurzgesagt made on the immune system as a way to explain this complexity a little more simply.

https://www.youtube.com/watch?v=lXfEK8G8CUI

[doingtheiroming]

The book that accompanies the Kurzgesacht series is very good. I bought it for my eldest who enjoyed it enormously. He's been complaining about his HS biology lessons being rubbish as a result.

[doingtheiroming]

The fact of its complexity is why we need to start treating it as a unit. Reductive thinking, research and treatment won't lead us to a proper understanding of it. Among the potential benefits of the development of AI is hopefully an improvemnt in our ability to reason about and understand complex entities like the immune system. I think it's more likely that a new specialism will develop from that, that doctors developing one from what exists today.

[haldujai]

> immune system to have it's own specialists in research and treatment

Huh, immunology is a 2-3 year accredited fellowship and board certified medical subspecialty. Pretty much every academic center has basic and clinical research programs in immunology.

[lindsaywaterman]

Hello - I'm not sure I totally understand your question however I am sorry you have suffered so much with this. In my experience there is often an overlap between central sensitization and other chronic illness. So for instance, 30% of people with Rheumatoid Arthrtiis have fibromyalgia. Which means ,they have joint pain and fatigue even when there is no active RA. So it's never wrong to try a pacing approach to see if it helps. Good luck! (cfsselfhelp.org)

[hollerith]

>So it's never wrong to try a pacing approach to see if it helps.

How many people who've had chronic fatigue or post-exertion malaise for a few years do you think haven't tried pacing?

I'm sure some have not tried it, but my guess is that it occurs to most as a pretty obvious thing to try even without a health-care provider's or information source's suggesting it.

Even if a person's first response to chronic fatigue is to try to power through it and work even harder, after a few months of that strategy's not working, most people it seems to me will try taking it as easy as practical for a while.

[lindsaywaterman]

I would say most of the 100s of patients I have seen w cfs or fibro haven’t given pacing a good try - either they do t have the common sense you mention, or they do, but are unable to make the changes required to actually pace. Ie making boundaries with family, leaving an abusive partner, taking time off a cherished job etc. And then, it is very rare for a person to, once they have removed these more external sources of stress, start to work on pacing their internally generated stress (ie “free floating anxiety” etc) through dedicated mindfulness and appropriate psychotherapy.

[hollerith]

OK. Also, I can see how a patient might neglect to consider the hypothesis that he must pace mental work as well as physical work.

[lindsaywaterman]

Exactly - mental, physical, and emotional work. IMO real pacing is extremely difficult, requiring a real transformation in life approach over the course of 3-5 years. And without certainty that making the sacrifices will pay off, most people take only half-measures, get poor results, and conclude it doesn’t work.