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 for most, it is a natural thing to try even without a health-care provider or online source suggesting it.
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...
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
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.
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.