Auto-inflammatory diseases – What can they tell us about ME/CFS?

[chrisb]

@Jonathan Edwards

Sorry to trouble you. That response is very interesting. I suspect most of us who have been referred to specialists will, at some time, have been asked whether parents or siblings have suffered from anything similar, and will generally have answered "no".

Do you think that your response has implications for the question that should be put? Could having a parent with, say, ankylosing spondylitis, increase ones risk for developing an idiopathic ME type illness, and should the possibly relevant conditions be specified? I suspect that most patients would not realise that AS in a parent might be relevant to the answer.

 

[Jonathan Edwards]

@Jonathan Edwards

Sorry to trouble you. That response is very interesting. I suspect most of us who have been referred to specialists will, at some time, have been asked whether parents or siblings have suffered from anything similar, and will generally have answered "no".

Do you think that your response has implications for the question that should be put? Could having a parent with, say, ankylosing spondylitis, increase ones risk for developing an idiopathic ME type illness, and should the possibly relevant conditions be specified? I suspect that most patients would not realise that AS in a parent might be relevant to the answer.

I think it all becomes too speculative to link a relative with AS to ME. But it would be an interesting epidemiological question as to whether there was a familial link.

 

[Woolie]

One lot of these diseases are genuinely based on innate immune abnormalities alone as far as we can see. These include the hereditary fevers - Familial Mediterranean Fever, Hibernian Fever, and other rare syndromes. Typical inflammatory markers are present like CRP and high white cell count.

But there is another group of illnesses that come under auto inflammatory that in fact involve adaptive immune cells but where there is no particular evidence for these adaptive cells being auto reactive. This is quite hard to explain but it is relevant to the suggestion from Mark Davis that there might be T cell clonal expansion. We all have T cells recognising foreign antigens as they are supposed to but it might be that if some of these get too enthusiastic we get ill just because of the faff going on from T cells that ought to be doing a useful job.

That was actually incredibly clear - and useful @Jonathan Edwards.

I was confused about those diseases that are sort of in the middle of the spectrum, like Crohn's.

I recently got diagnosed with one of those hereditary autoinflammatory diseases you mentioned above (won't say which one). But a lot of my symptoms are not typical ME ones. I have severe flu-like episodes where I'm bedridden and burning, but historically, I've been asymptomatic in between episodes (its less clear cut now I'm in my 50s). I've also never had a problem with brain fog. Headaches that kill, burning head, but never brain fog.

I have the blood markers you mentioned and a few more, but most of these only appear during episodes. And I never knew any of this till a few months ago.

My diagnosis of CFS in the early 90s (when autoinflammatory diseases were largely unknown) shut down medical investigation into my condition for nearly 30 years.

 

[Gingergrrl]

My diagnosis of CFS in the early 90s (when autoinflammatory diseases were largely unknown) shut down medical investigation into my condition for nearly 30 years.

I'm glad you are looking into this further and I hope your doctors are being thorough now and taking it seriously. I agree that a "CFS" diagnosis (at least in the US) tends to shut down further investigation unless you really advocate, get multiple opinions, and never stop looking.

 

[Louie41]

Thank you, @Woolie, for this interesting, informative and clear post.

 

[Josie]

I sometimes take hydrocortisone and 10-15 mg already brought some relief to calm inflammation down. But only when I am very calm, no physical excertion. Its interesting that paradix stress response.
I guess adrenaline and cortisol dampen inflammation and thats why I feel better with stress. I dont have these nasty flu like limb pain then. By the way, ibuprofen helps too.
Its strange that my interleukines look so normal, I dont know for what inflammatory makers to watch out, because I guess when cortisone & ibuprofen helps, there must be some kind of inflammtion. Probably triggered by mast cells, but not 100% sure about this.

Hi @Josie. Sorry, I only just saw your message.

I was struck by this. A few of us here on the forum have described a similar thing, a sort of paradoxical stress response. You get a little symptomatic relief during the stress, and when that passes, then the symptoms come back to bite you in the bum.

I had a look at your test results. The IL-beta one is perhaps worth asking someone about. IL-B is elevated in people with autoinflammatory diseases.

Its unlikely that you'd fit the criteria for any of the known autoinflammatory diseases. They almost all involve fevers (high temperatures). But some of the same mechanisms might be involved.

When you say cortisone helps, do you mean drugs like prednisone? If so, how much of a dose gives you relief and for how long?

 

[Woolie]

@Josie, that's a really low dose of hydrocortisone, so I wouldn't expect it to give you a great deal of relief. Interesting that it gives you some, though. Just to give you a point of comparison: When in a bad crash, I used to get some relief from 40mg of prednisone daily, which is roughly equivalent to 160mg of HC (it no longer works for me, I think I've got worse).

I thought your IL-beta looked a little on the high side? Maybe worth getting that checked again?

Most of the markers in my blood are only evident when I'm at my worst, so that's worth bearing in mind, too. Could be worth getting retested during your next major crash?

It now appears that weird stuff had been coming up in my blood tests for years, and everyone was just dismissing it as "she's probably just got a bit of an infection right now". So good that you're reading and keeping track of your own tests.

 

[Daisybell]

@Woolie - out of interest, are the doctors now thinking you don’t have/have never had ME, now that you have an alternative diagnosis?

 

[Woolie]

@Woolie - out of interest, are the doctors now thinking you don’t have/have never had ME, now that you have an alternative diagnosis?

Good question. None of my doctors has commented and I haven't asked (who even knows how seriously they took the ME diagnosis in the first place?). But I know what I think. All my symptoms - past and present - seem consistent with my new diagnosis. So yes, I suppose I never had "ME".

But then maybe none of us really "has ME"? We each have some unknown disease (with some common symptoms), but until that disease is known, we call it ME?

It doesn't make sense to me to give people a dual diagnosis disease X and ME. Not if disease X could plausibly account for all their symptoms. So, broken leg and ME, that sounds fine. Because a broken leg couldn't reasonably be expected to cause prolonged fatigue, brain fog and PEM. But MS and ME? That sounds bizarre. Because the MS is likely to be responsible for all the symptoms, including fatigue and PEM. Its a sort of Occam's razor situation. Don't presume a person has two concurrent, unrelated diseases at the same time, if all the symptoms are reasonably consistent with just one - not unless there's a really, really good reason.

Anyway, that's the way I'm thinking now. I realise my judgement's affected by my recent personal experiences, though.

 

[Samuel]

@Woolie

in https://www.s4me.info/index.php?thr...ies-would-you-test-for.1481/page-2#post-28213 , i describe a symptom profile that has massive numbers of symptoms and signs.

i have this profile, and i believe others on this forum, perhaps 2-3 on that thread alone, possibly do also.

most pwme with long lists likely do not list all of their symptoms for /anybody/. in my case, for health reasons, it took me from the time of discovery of xmrv to the present to compile my diagnostic story to be reasonably presentable.

your question of occam seems highly relevant.

@jonathanedwards 's response will take me time to go through, but he says [possibly out of context]:

> The bottom line is that if a doctor is given a long list of symptoms they have no way of making any sense of them in terms of a recognised syndrome for which they can find evidence in the books for a cause. So the usual practice is to try to make sense of four or five major symptoms and assume that the others may be coincidental.

which would be good to try to reconcile with occam.

on the other hand, i have had many exposures, to pesticides, mold, etc.

 

[Woolie]

That's an interesting thought, @Samuel. I just read over that other thread where you posted, and it seems to be presenting the opposite view from mine. That you focus on a core set of symptoms and assume any others are coincidental.

But maybe not as different when you look more closely? What @Jonathan Edwards seems to be saying is that you can only do so much with symptom profiles. The more selective and distinct - and sparse - the symptom profile, the more useful it is in narrowing down the potential diagnoses. If the symptom profile becomes too broad, it's not so helpful in guiding that process. So then you focus on a subset of "central" symptoms.

I could be reading more into his words than he was actually saying, though.

I would agree with your philosopher colleague who said Occam's razor is "nice to have". Its always good to opt for the simplest explanation that fits all the facts. But you can always be wrong, it might turn out that the more complicated explanation is actually true. So Occam's razor is merely a strategy to guide our explanations when there's some uncertainty.

So: you would need a really good reason for thinking a person has two entirely unrelated and rare diseases at once. Better to assume one disease, so long as the symptoms are broadly consistent with that. And just put the more unusual symptoms down to individual variability.

I'm no doctor, but I'm figuring too that symptoms are a very imprecise indicator of disease, because the same disease might manifest in different symptoms in different people, and different diseases can cause the same symptoms. The most useful symptoms are those that are highly specific to a particular disease. So headache, for example, that sucks. So many causes. But pain that runs from the chest to the left arm, that's pretty useful. So you focus on the latter type of symptom.

 

[Samuel]

hi @Woolie,

i can't comment on je's post much until i have the health level to go over it closely. i want to make sure i understand it.

but fwiw, the philosopher thought occam was an /aesthetic/ rule. that's /all/ he thought of it. he didn't think it raised probability. philosophers didn't think about probability or information theory. they were big on the excluded middle, which is great for logic, but not powerful enough for the epistemology needed to do good science. so they tied themselves into knots.

science is inductive, so you are right that complex answers are sometimes the case. occam does not make them false. but unlike the philosopher, i believe that occam says they are /less probable/, all else equal.

in reality, it is messy. there are many considerations, including basic stuff like matching other stuff we think we know in science.

btw samuel's law, in old posts on my blog, is related. the general version states that any theory about anything must fit the facts. the specific version applies to inferences drawn from only a limited range of severity levels.

 

[Subtropical Island]

This is a very old thread but I’m not sure I want to open a new one for this.

I’m thinking about it again because I’ve suddenly got a fairly strong immune response (first a hives-like rash which blew up into bullae but all in the discrete area of skin where I used an adhesive bandage, and also a few weeks of what might be called silent reflux although it’s not so silent now). And I’ve taken an antihistamine which feels a good deal better (though not changing the skin inflammation it’s eased the skin itch and pain and reduced the reflux which I wasn’t expecting) and my glands just under my jaw on my neck are better for the first half of the day (it’s a 24hr antihistamine). Getting to a doctor for blood tests might be smart but it will cost me a lot in every way so I’m not rushing at that yet. And I’d like to m,ae the most of it if I do go.
The rash turned to a couple of thick rectangles of bullae is exactly where the adhesive was but was worse on the one that came loose so I wonder if it’s not just the adhesive but some environmental exposure that got adhered to my skin.

What I’m trying to say is not about my specific case but more that it has occurred to me that my illness might possibly be a chronic exposure to an allergen (to which I have developed a response) which has been keeping my body inflamed, made worse by various things that I put down to PEM.
I take ibuprofen sometimes and it distinctly helps in sometimes indefinable ways. Like I will be feeling miserable and I’ll take ibuprofen and it will feel like pain has been relieved (even if I couldn’t tell you beforehand that I was in pain exactly). I get a lot of joint aches etc in PEM, flu symptoms etc. And diarrhoea in PEM that’s become so routine I almost think it’s normal to have to manage it.

How would I differentiate if that were the case (auto inflammatory)? Are there symptoms or patterns or tests that would rule things in or out?

 

[Yann04]

This is a very old thread but I’m not sure I want to open a new one for this.

I’m thinking about it again because I’ve suddenly got a fairly strong immune response (first a hives-like rash which blew up into bullae but all in the discrete area of skin where I used an adhesive bandage, and also a few weeks of what might be called silent reflux although it’s not so silent now). And I’ve taken an antihistamine which feels a good deal better (though not changing the skin inflammation it’s eased the skin itch and pain and reduced the reflux which I wasn’t expecting) and my glands just under my jaw on my neck are better for the first half of the day (it’s a 24hr antihistamine). Getting to a doctor for blood tests might be smart but it will cost me a lot in every way so I’m not rushing at that yet. And I’d like to m,ae the most of it if I do go.
The rash turned to a couple of thick rectangles of bullae is exactly where the adhesive was but was worse on the one that came loose so I wonder if it’s not just the adhesive but some environmental exposure that got adhered to my skin.

What I’m trying to say is not about my specific case but more that it has occurred to me that my illness might possibly be a chronic exposure to an allergen (to which I have developed a response) which has been keeping my body inflamed, made worse by various things that I put down to PEM.
I take ibuprofen sometimes and it distinctly helps in sometimes indefinable ways. Like I will be feeling miserable and I’ll take ibuprofen and it will feel like pain has been relieved (even if I couldn’t tell you beforehand that I was in pain exactly). I get a lot of joint aches etc in PEM, flu symptoms etc. And diarrhoea in PEM that’s become so routine I almost think it’s normal to have to manage it.

How would I differentiate if that were the case (auto inflammatory)? Are there symptoms or patterns or tests that would rule things in or out?

I get similar symptoms. I’m at the point where I have to take 2 antihistamines every day or it is unbearable. I hope you find answers.

 

[Jonathan Edwards]

How would I differentiate if that were the case (auto inflammatory)? Are there symptoms or patterns or tests that would rule things in or out?

Autoinflammatory problems are in general not like allergies with local blisters or rashes and not related to mast cells or histamine. Rare mast cell conditions like mastocytosis could perhaps be called auto inflammatory but that is not a usage I have heard.

 

[Kitty]

What I’m trying to say is not about my specific case but more that it has occurred to me that my illness might possibly be a chronic exposure to an allergen (to which I have developed a response) which has been keeping my body inflamed, made worse by various things that I put down to PEM.

I don't know from a medical point of view, but from my own experience I think you might know by the patterns. Even with low-level allergies that are only really a nuisance, the reactions tend to fall into familiar categories: runny nose and eyes, headaches, skin reactions, asthma-type chest constriction, facial swelling, GI reactions.

The biggest clue in differentiating allergy symptoms from those of ME/CFS is that antihistamines make a marked difference. Even if over-the-counter meds only reduce intensity and take time to work, the reactions are noticeably less uncomfortable with them than without. They'll only help with allergy symptoms, too, there's no meaningful difference in PEM etc.

How would I differentiate if that were the case (auto inflammatory)? Are there symptoms or patterns or tests that would rule things in or out?

Dermatology clinics can test for allergies, but if cost is a factor, the size of the panel might be reduced by doing some of it the cheap way? Start by eliminating the most common allergens for a period of time, and work down the list. Improvements often start showing fairly quickly.

Some are trickier to exclude than others, especially pollens, house dust mite poo and the ingredients of detergents. Allergy testing for these might be worth doing if you've ruled out most of the easier ones.

Finally, ibuprofen makes me feel better as well, but it doesn't mean I don't react to it. Mild reactions can add to the general symptom burden without you even realising; it probably took me two years to notice that whenever I got night-time shoulder pain from an overuse injury, I also got worse asthma.