What do we mean by a diagnosis like ME/CFS?

Amw66 said:
Calcium channel blockers - channelopathy
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Diagnostically or otherwise, I am not sure what role channelopathies play in ME/CFS. It may be the end game, it may be irrelevant. Like the Australian school, I get the symptom similarities. Testing, though - how do you overcome norma-values?

The concept of acquired PP is curious, and I think largely ignored.
 
Kitty said:
@Jonathan Edwards, does this phenomenon tend to occur in rheumatological or other diseases? I don't mean relief when a flare settles down, I mean improvements that can't really be explained by treatment or management.

Struggling to get my foggy brain around whether this is a meaningless way of looking at it because it doesn't compare like with like. There's no tissue damage in ME/CFS that could potentially heal, and conditions like psoriasis might remit or go away but they don't improve.
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Well now, that got me thinking more about co-morbidities. I’ve had psoriasis for 50 years. I have plaque, scalp, nail, and crease psoriasis. In the acute phase I was treated with coal tar preparations, phototherapy, antihistamines, it was everywhere head to toe. Still have nail, elbows, inside the ears and a small patch behind the ears, but that’s all.

I’ve used a prescribed topical steroid for decades which I use daily. I have never had a period completely free of psoriasis, but it has been stable. That’s been the case for the last 40 years.

I’m a maximum of 16 years with ME/CFS. Absolutely, no flare up of psoriasis during that entire period, even when I was hospitalized with malnutrition or sectioned, nor even now. Mine does not fluctuate with flare up of ME/CFS or the two periods of prolonged relapse which took me from mild/moderate to severe, and severe/very severe, but it is constantly present.

Have had two separate problems with my blood though in the last 16 years, one which is ongoing. I’m currently entering my 6th week with a streaming cold, a usual pattern for me.

So I’ve updated my knowledge on current thinking about psoriasis.

This is the NHS info. Psoriasis - NHS with a link to the Psoriasis Association which I was aware of. About psoriasis

I was a little surprised to find this on The Psoriasis and Psoriatic Arthritis Alliance website 1993-2025, but then my last contact with any intensive treatment was back in the 1970s early 80s when absolutely none of this was discussed.

My Psoriasis never prevented any activity. I did not experience any of these fatigue symptoms at the time of the acute phase nor since, and I had a full working life right up to the age of 50 years old when I had my first collapse. I’m 66.

Up ‘til that point no-one would describe me as lazy or lacking in energy, nor do I recall any of the other symptoms as being part of my 50 year experience of all levels of psoriasis.

The first time I experienced unfreshing sleep was with ME/CFS and I wouldn’t have been able to do the jobs I did with cognitive difficulties or if symptoms were “made worse by physical or mental exertion”. But that’s just my own experience, it seems to be different for others these days. I certainly wasn’t sectioned because I have psoriasis!

Psoriatic fatigue: Why do I feel so tired?

“Is it normal to feel fatigued in psoriatic disease?

It is normal to feel tired after exertion, insufficient sleep or at the end of the day; this tiredness is usually relieved by rest or sleep. With fatigue, the symptoms often go beyond normal tiredness and can include decreased or lack of energy with accompanying physical or mental exhaustion. These symptoms usually persist even after a good night’s sleep.

In the UK, 10-20% of the population report being tired for a month or longer, with 1.5% feeling a need to see their GP. The symptoms often include difficulty sleeping; muscle or joint pain; headaches; painful lymph nodes; sore throat; cognitive dysfunction; symptoms made worse by physical or mental exertion; flu-like symptoms; dizziness; nausea; or palpitations.

What causes fatigue?

As described above, inflammation appears to be part of the process of feeling fatigued, but researchers do not know exactly what the link is, or how increased levels of inflammatory substances in the body influence fatigue.

Myths and misconceptions

There are many myths and misconceptions about fatigue. People are sometimes wrongly viewed as being “lazy” by their work colleagues and sometimes by their own family members.

The reason that the person affected by fatigue is unable to carry out basic everyday tasks is the inflammatory process taking place in their body. People often think that caffeine will help wake them up. As caffeine is a stimulant, the effects are short-lived; people often feel more tired once the initial effect wears off. Caffeine is typically found in coffee, tea, cola and energy drinks. Caffeine is also a diuretic, causing dehydration, which will also have a negative effect. In some instances people may resort to the use of alcohol, under the misapprehension that it will relieve the symptoms. However, alcohol is likely to make people drowsier, depressed and can affect sleep, which will also contribute to fatigue.”
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New drug is gamechanger in psoriasis treatment Manchester University 2021 BE SURE and BE RADIANT trials. Bimekizumab treatment now being offered by Dermatologists as far as I can see from the NHS site, and the Psoriasis Association targeting IL17A and IL17F.

“This drug sets a new bar for psoriasis treatment and we are hopeful that trials in treating other diseases triggered by over active Interleukin 17A and Interleukin 17F will also lead to improvements in patient care .”
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The current NICE Guideline CG153 for Psoriasis is September 2017 so does not mention Bimekizumab. Recommendations | Psoriasis: assessment and management | Guidance | NICE

ETA: link to trials Safety and efficacy of bimekizumab through 2 years in patients with moderate-to-severe plaque psoriasis: longer-term results from the BE SURE randomized controlled trial and the open-label extension from the BE BRIGHT trial - PubMed
 
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Maat said:
Psoriatic fatigue: Why do I feel so tired?
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That site looks seriously garbled. I have not read through all of it but wonder if its an undercover advert for the IL-17 drug.

Nevertheless, I have been wondering if at least some ME/CFS might involve the sort of non-specific disorder of T cell behaviour seen in psoriasis or Crohn's for some years. The data on MAIT T cells from London School of Hygiene might fit with that. I remain sceptical but I do think there might be a case for a double blind placebo controlled trial of an IL-17 inhibitor in people with ME/CFS, maybe selected for certain features that might suggest they belong to an IL-17 subset.

Thee is no inflammation in ME/CFS but that doesn't matter. The quoted piece on 'psoriatic fatigue' is very confused on that. IL-17 might easily cause fatigue without inflammation.
 
Jonathan Edwards said:
That site looks seriously garbled. I have not read through all of it but wonder if its an undercover advert for the IL-17 drug.

Nevertheless, I have been wondering if at least some ME/CFS might involve the sort of non-specific disorder of T cell behaviour seen in psoriasis or Crohn's for some years. The data on MAIT T cells from London School of Hygiene might fit with that. I remain sceptical but I do think there might be a case for a double blind placebo controlled trial of an IL-17 inhibitor in people with ME/CFS, maybe selected for certain features that might suggest they belong to an IL-17 subset.

Thee is no inflammation in ME/CFS but that doesn't matter. The quoted piece on 'psoriatic fatigue' is very confused on that. IL-17 might easily cause fatigue without inflammation.
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I've added a link to some of the trials. A person I worked with had Crohn's and then diagnosed also with ME/CFS.
 
Sean said:
I think this is important. Exertion, of any form, certainly is a consistent trigger/exacerbator of PEM for me. But it can also happen without any exertion in the previous few days (beyond minimal self-care and life admin stuff).

The so called 'baseline' for me, to the extent it exists, is nothing more than whatever degree of PEM that unavoidable minimal level of necessary exertion produces. But it is still highly variable, often opaquely and unpredictably.
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Maybe we are not looking at all factors that cause PEM?

I have noticed over the years of talking to many is that eating a meal can push a person into a deeper PEM state. It is not just the activity of eating but the unseen digestion that is important to recognise.
 
Jonathan Edwards said:
That site looks seriously garbled. I have not read through all of it but wonder if its an undercover advert for the IL-17 drug.

Nevertheless, I have been wondering if at least some ME/CFS might involve the sort of non-specific disorder of T cell behaviour seen in psoriasis or Crohn's for some years. The data on MAIT T cells from London School of Hygiene might fit with that. I remain sceptical but I do think there might be a case for a double blind placebo controlled trial of an IL-17 inhibitor in people with ME/CFS, maybe selected for certain features that might suggest they belong to an IL-17 subset.

Thee is no inflammation in ME/CFS but that doesn't matter. The quoted piece on 'psoriatic fatigue' is very confused on that. IL-17 might easily cause fatigue without inflammation.
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Why do you say there is no inflammation in ME?
 
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Jonathan Edwards said:
I do think there might be a case for a double blind placebo controlled trial of an IL-17 inhibitor in people with ME/CFS, maybe selected for certain features that might suggest they belong to an IL-17 subset.
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Might there be something to learn from people with both severe psoriasis and ME/CFS? Assuming they could be identified, that is, and there were enough of them to draw conclusions.

I have it, but it didn't appear till I was 65 and had had psoriatic arthritis for 14 years. Steroids were enough to sort the scalp psoriasis and the vulval rash went away on its own after a few months, so it's unlikely I'd be offered a higher tier treatment. But people with more severe disease are, and some of them probably have ME/CFS.
 
DigitalDrifter said:
So are you saying that if a patient gets PEM from emotional exertion then their illness is partially psychosomatic?
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I think the words we need to concentrate on is "exertion" and "energy needed". We need to understand what energy is needed how and why and where we see the lack of it and then we can ask the question why?

I have been asking the question - do we really understand what it takes to produce energy? For instance, do we know and understand what energy it takes to be so excited that your body just buzzes?

If we look at PEM, as an inability to produce energy on demand or sustain energy, having emotions causes those with ME and PEM a problem that we never factor in - energy needed above and beyond what it can produce.

This is something I stared to question/understand and work through when my son Angus stated that he could not afford the energy to be excited about Christmas, a few years back.

I have read through nearly all the comments made on here and what is glossed over is the fluctuations, they are so important. Through the years I have supported many to go through school attendance, family court and PIP appointments. Fluctuations in these appointments have been used to also state ME is a mental illness, why can you come to school some days and not others. To me it makes logical sense that PEM fluctuates because everything impacts on energy, which then impacts on the ability to move/sleep/eat/think, therefore increases symptoms and failure in the body to recover.

If you are using energy to listen to music say, you have no energy to digest food, yet no one thinks in these terms because they are, as far as healthy people are concerned, effortless, no energy needed.

If your body is using all it has for keeping upright; lets say, then you may not have enough nutrients to fight viral/parasite or autoimmune issues within the body as in the ecosystem. Some people are fighting all three at the same time and that has an impact on energy needed pushing you into a PEM state and symptoms. Keeping their activity normal we know is impossible and to increase to stop deconditioning plunges them into a worsening state.

This is all about meeting needs of the body?

@Jonathan Edwards so the question I would like to be looked at medically, discussed and in research is - the cascade of issues that PEM causes. PEM in my experence is the driving cause of severity. Is this then due to the inability of the body to cope with the demand put on it through; for want of a better word the broken ecosystem (all of it not just in parts of it) as in the body can only cope with the demands imposed on it by Viral/parasite/autoimmune if it can utilise what is needed ? If it has nothing to use then Is that what we see when an infection first hits - a surge in energy needed, all the systems calling for energy to perform their individual tasks and then a failure in those systems.
 
Tilly said:
To me it makes logical sense that PEM fluctuates because everything impacts on energy
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To my mind it depends more on tolerance rather than energy. Lack of tolerance could have the result of making someone feel too exhausted to go on, so they might well describe it as a lack of energy.

However, researchers seem to find little or no evidence of a fundamental lack of energy in people with ME/CFS, so we probably need another way of looking at it.

If expending effort results in an all-points bulletin being sent out saying STOP THAT!, then by focusing on energy we're looking at the wrong thing. It's lack tolerance to activity that prompts the alert, and it's the alert that results in the exhausted feeling.


ETA: Tolerance might not be the ideal word, it's just the best I could come up with.
 
Tilly said:
@Jonathan Edwards so the question I would like to be looked at medically, discussed and in research is - the cascade of issues that PEM causes. PEM in my experence is the driving cause of severity.
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I think that is using the term the wrong way around. PEM isn't something that causes anything. It is the name for an effect - a fluctuation in severity and spectrum of symptoms.

We certainly want to know what causes PEM but at the moment we have no idea at all. Until we get a clue from something like DecodeME I think we are pretty stuck because all the tests for causal paths people can think of come out normal.

I don't find the talk of energy useful because this doesn't have anything to do with energy in the medical or biochemical sense. 'Energy' in a popular sense is a way we feel and nobody has any idea what controls it, except perhaps endorphins or maybe other neurotransmitters.
 
Kitty said:
Might there be something to learn from people with both severe psoriasis and ME/CFS? Assuming they could be identified, that is, and there were enough of them to draw conclusions.

I have it, but it didn't appear till I was 65 and had had psoriatic arthritis for 14 years. Steroids were enough to sort the scalp psoriasis and the vulval rash went away on its own after a few months, so it's unlikely I'd be offered a higher tier treatment. But people with more severe disease are, and some of them probably have ME/CFS.
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In the genes? My mum didn't develop Psoriasis until she was 55, and then only mildly. I'd had it for over 15 years by that stage. My brother had exzema as a child. Causes | Background information | Eczema - atopic | CKS | NICE
 
Maat said:
In the genes?
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Sorry, I wasn't very clear. I meant, does taking an IL-17 inhibitor drug for psoriasis have any effect on the person's ME/CFS?

If there is evidence of an effect, it might help make a case for a small trial in people with ME/CFS.


ETA: When it comes to age-at-onset, psoriasis does seem to have two peaks. They don't match ME/CFS exactly (the second peak is later on in middle age), but if it is characteristic of T-cell associated conditions, it's kind of interesting.
 
Kitty said:
Sorry, I wasn't very clear. I meant, does taking an IL-17 inhibitor drug for psoriasis have any effect on the person's ME/CFS?

If there is evidence of an effect, it might help make a case for a small trial in people with ME/CFS.
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I'd be surprised if anyone's even recorded such evidence so far. I was treated with phototherapy for psoriasis at the same Hospital as the CFS/ME Management clinic I attended decades later, so it was in my medical notes and I pointed it out to them in 2011. It wasn't relevant as far as they were concerned. It was the RNHRD.

Came across this today Increased risk of chronic fatigue syndrome following psoriasis: a nationwide population-based cohort study - PMC Taiwan 2019 using Fukuda to define CFS.

Cumulative incidence of CFS
During the follow-up period, the number of patients diagnosed with CFS were: 50 patients with psoriasis (1.91%) and 126 participants without psoriasis (1.20%) as seen in Fig. 1. The cumulative incidence curves of CFS according to psoriasis status are illustrated in Fig. 2. A log-rank test was used to determine the cumulative incidence of CFS between the groups, showing that the cumulative incidence of CFS was significantly higher in the psoriasis group than in the non-psoriasis group (P = 0.006).
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ETC: date of study.
 
yME said:
But do we not have a complimenting recovery mechanism leading to those very rare ‘good days’ or even run for England hours which overshoot our baseline? Assuming others experience the same, what is the C that may trigger this meteoric change which for me can occur just a quick as pem arrives
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Yes, in my severer years I called these 'good hours' breathers. I would gather all the inner strength, mental grit that I could to help get through the next barrage of symptoms.

In those years that barrage of symptoms were layered, some coming on top of each other, odd ones leaving, new ones arriving and this would all be hour to hour. Just awash with it all.

I'd never want to go back to those years again. Just too hard and endless.
 
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Jonathan Edwards said:
PEM isn't something that causes anything. It is the name for an effect - a fluctuation in severity and spectrum of symptoms.
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That is my sense of it. PEM is the consequence of whatever is driving the problems underneath.

In the same way as somebody who has been stabbed and is bleeding onto the kitchen floor is not afflicted by blood on the kitchen floor syndrome. They are afflicted by a stab wound causing external blood loss, and the surface they are bleeding onto just happens to be a kitchen floor, but could just as easily be a concrete driveway or a lawn, or they could be bleeding into a bath or pool, etc. The critical fact is that they are bleeding, not where the blood is ending up once it leaves their body.
 
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