Cortisol levels in ME/CFS

[EndME]

Would that disappoint those 1st responders who only want the stress-response option with a multiple choice MUS question to pass their easy-read neuro-rehab exam for re-enablement of crippled sufferers with medically unexplained, endearing but enduring and persistent symptoms of dysregulating, factitious, false illness-belief, which "we all believe and teach" making it the only realistic and pragmatic opportunity (by proxy)?

I think one also has to admit that this wasn't only a BPS narrative but also a narrative spread by people believing in a "biological basis". For example Putrino and Iwasaki were giving widespread interviews on having found a "biological basis" and biomarkers for Long-Covid on the basis of results that anybody should be able to see couldn't stand the test of time.

 

[Arfmeister]

We can almost close the thread I would have thought! Cortisol is clearly irrelevant.

I definitely wouldn’t close the thread. (But I know you’re not planning to do that )

As I’m busy with analyzing the lowest quality data available : online polls and quantitive patient experiences - with glucocorticoids

• I still haven’t finalized this survey, but I already find it quite interesting
• therefore I’d like to give a snapshot of the data (but mind you it’s still work in progress and there’s a lot of detail I would like to lay out)

It’s not based on supposedly low cortisol in ME/LC - but on a big ME-subgroup that had benefits from supplementing in cortisol

Reason I got interested in glucocorticoids is the remarkable improvement I got on a 4 week course of steroids (best improvement I ever had in 17 years). But always keep in mind, glucocorticoids are nasty drugs with a lot of long-term side effects.

Anyway, here is some preliminary data. When I have more conclusive data, I will post it with a lot more detail.

Overview ME-Patient experiences with:

• Hydrocortisone (cortisol equivalent)
• Prednisone / Prednisolone
• Methylprednisolone
• Dexamethasone
• Betamethasone

 

[Hutan]

Thanks Arfmeister

It’s not based on supposedly low cortisol in ME/LC - but on a big ME-subgroup that had benefits from supplementing in cortisol

I believe that things like prednisone can induce feelings of wellbeing and high energy even in healthy people. So, I think that needs to be kept in mind when evaluating the impact of these drugs on people with ME/CFS. I'm actually surprised that there isn't a higher percentage of people reporting a benefit.

e.g. this abstract from a 1988 study:

It is a clinical impression that some patients given oral corticosteroids develop a sense of wellbeing that is 'inappropriate' to improvements in physical health. This has been termed steroid 'euphoria', but unlike steroid-induced psychosis it has not been documented. To test for the size and frequency of this phenomenon, 20 patients with severe chronic obstructive airways disease (mean FEV1 0.86 l) were given 30 mg of prednisolone for 14 days, after a period of placebo administration in a single-blind study.

Lung spirometry and arterial saturation during exercise were measured serially, together with established measures of mood state. No changes in spirometry or arterial saturation during exercise were detected until 7 days of active therapy. Mood state did not change during the placebo period, but small significant reductions in anxiety and depression were measured after 3 days of prednisolone and before any measurable improvement in lung function. Mood state did not then further improve, despite measurable improvements in lung spirometry.

This is evidence that prednisolone may produce a mild 'inappropriate' sense of wellbeing within a population receiving the drug, rather than as an occasional idiosyncratic response.

 

[Lou B Lou]

Thanks Arfmeister

I believe that things like prednisone can induce feelings of wellbeing and high energy even in healthy people. So, I think that needs to be kept in mind when evaluating the impact of these drugs on people with ME/CFS. I'm actually surprised that there isn't a higher percentage of people reporting a benefit.

e.g. this abstract from a 1988 study:

@Hutan wrote - "I believe that things like prednisone can induce feelings of wellbeing and high energy even in healthy people."

I had a course of high dose Prednisolone from early September. 40mgs for 4 weeks then gradually reduction (still reducing very slowly).

I definitely had the feelings of wellbeing on the higher dose, down to 25mgs, but definitely no increase in energy.

I had my normal ME response to the additional appointments, which was PEM (GP and hospital, travelling, upright in waiting rooms, walking around the hospital, medical investigations that led to the prescribing of prednisolone, the prescribing was nothing to do with ME).

The feelings of wellbeing were not really euphoria, but were quite pleasant and meant I was not as fed up as I probably should have been.

 

[Jonathan Edwards]

Yes, there are various reasons why one would expect steroids to help people feel better, at least short term, but it is crucial to note that this has no bearing on the question as to whether abnormal steroid regulation contributes to ME/CFS symptoms. That link would be non-sequitur.