Building an evidence base for management of severe ME (including sleep management)

[rvallee]

Those are good points, I have one suggestion, but it could be a little controversial:

They could imagine themselves having the illness. I mean there was a big swing in the perception of HIV once the general public started realising it could happen to them too.

Because it kills. People can imagine that, it's binary and simple. Lifelong chronic illness is something even most physicians can't wrap their heads around, most have a cartoonishly misguided opinion about it. Remaining sick is simply not something medicine thinks about. If you're alive, that's the end of it. Anything else has to be demanded and fought for, continuously as otherwise it gets dismantled, and is considered "extra", somebody else's problem, except no one has authority so it just remains unaddressed.

 

[Barry]

I'm not sure this is necessary? There is a common underlying physiopathology in mild, moderate and severe.

But is there? We don't know that. We don't even know what the physiopathology is.

The Biobank hand-grip strength test paper showed that the different severities were almost different illness. The results were distinctly different.

How can we ensure a treatment is safe for severe patients if that's never safely tested?

Either way, I would think safety testing has to be done for pwME at varying severity levels. One of the major blind spots in much of the BSP-led ME science is the presumption that extrapolation of findings (across severity levels, across diagnostic definitions, etc) is OK. Even if the underlying condition does eventually prove to be the same, there could still be no safe presumption that differing severity levels can be treated the same - that would have to be a hypothesis that needed carefully testing. Such testing might then find that extrapolation would be OK, in which case fine, evidence would have been found that it is OK. Alternatively it might be found that as severity increases then maybe various physiological "tipping point" thresholds might be crossed, requiring differing treatments for both efficacy and safety.

Such a lot still needs to be discovered. And thanks to the BPS'ites we are so much further behind in that than might otherwise have been.

 

[Barry]

I get that. But it doesn't matter so much if it's not accurate, so long as it's consistent.

I've not read / digested all of this thread, but that is an important concept throughout much of life, and particularly in engineering. There is a distinction between accuracy versus repeatability. An instrument may be decidedly inaccurate, but highly repeatable. A good instrument needs good repeatability, so that for a given identical stimulus time after time, it will render the same reading time after time, even if inaccurate. Once such an instrument is then properly calibrated to give accurate readings, it can then be relied upon to give accurate readings repeatably. A simple example is a clock, which these days can give incredible repeatability, but can be totally inaccurate if not set correctly. Once correctly adjusted (i.e. calibrated) then it will be accurate, and thereafter repeatably accurate.

 

[adambeyoncelowe]

I've not read / digested all of this thread, but that is an important concept throughout much of life, and particularly in engineering. There is a distinction between accuracy versus repeatability. An instrument may be decidedly inaccurate, but highly repeatable. A good instrument needs good repeatability, so that for a given identical stimulus time after time, it will render the same reading time after time, even if inaccurate. Once such an instrument is then properly calibrated to give accurate readings, it can then be relied upon to give accurate readings repeatably. A simple example is a clock, which these days can give incredible repeatability, but can be totally inaccurate if not set correctly. Once correctly adjusted (i.e. calibrated) then it will be accurate, and thereafter repeatably accurate.

Very good point.

 

[Subtropical Island]

I wonder if this thread needs to be split into two related but very distinct themes.
But it looks like it might be a big job.

 

[Amw66]

I've not read / digested all of this thread, but that is an important concept throughout much of life, and particularly in engineering. There is a distinction between accuracy versus repeatability. An instrument may be decidedly inaccurate, but highly repeatable. A good instrument needs good repeatability, so that for a given identical stimulus time after time, it will render the same reading time after time, even if inaccurate. Once such an instrument is then properly calibrated to give accurate readings, it can then be relied upon to give accurate readings repeatably. A simple example is a clock, which these days can give incredible repeatability, but can be totally inaccurate if not set correctly. Once correctly adjusted (i.e. calibrated) then it will be accurate, and thereafter repeatably accurate.

Just as there is a distinct difference between fatigue and fatiguability, the nuance of which esacpes almost every doctor we have seen

 

[Barry]

Just as there is a distinct difference between fatigue and fatiguability, the nuance of which esacpes almost every doctor we have seen

I think I understand the nuance but not sure. Can you clarify for me please.

 

[Hoopoe]

Fatigability is when the person quickly becomes fatigued when doing things, even when they were not feeling particularly fatigued when they started.

Within an hour, I can go from feeling relatively energetic to collapsing on bed. This is a problem of fatigability.

 

[Trish]

I wonder if this thread needs to be split into two related but very distinct themes.
But it looks like it might be a big job.

I'll report it for mod discussion, but, as you say, it may be impossible.

Edit: It has been decided not to split the thread, but to add sleep management to the thread title.

 

[Mij]

The warning of feeling unwell precedes fatigability and I'm not even sure it's fatigue.

 

[boolybooly]

But is there? We don't know that. We don't even know what the physiopathology is.

The Biobank hand-grip strength test paper showed that the different severities were almost different illness. The results were distinctly different.

How can we ensure a treatment is safe for severe patients if that's never safely tested?

I agree with you, we simply dont understand the disease and we have no idea what the different presentations really represent.

Those acting on behalf of interests which have a financial motive in seeing ME remain unrecognised as a distinct illness and not characterised as a physical illness have deliberately confounded different forms of CFS for decades.

I cant escape the feeling though that in response, several progressive small scale studies have kind of brushed over the subtypes issue by cherry picking their patients using clinician's experience and not standardised criteria.

So on the face of it replicability might prove elusive. Though there is the hope that if reliable lab tests can be developed to recognise some types of CFS then it will be the beginning of new methods for defining patient cohorts which can leap frog the chicken and egg situation with the rubbish CFS criteria we currently have, which the BPS lobby will keep trying to farm until the bitter end.

 

[chelby]

Evidenced based management advice I wish a doctor could advise me on:

NB: I am a moderate pt and have no medical education, please let me know if some of these ideas are silly.

- Orthostatic stress: How to position bed? Inclined for some orthostatic stress or elevate legs to minimize orthostatic stress.

- Stimuli Attenuation: How should stimuli attenuation be used? Is using ear protection and darkness advisable for rest, or will sensitisation outweigh the benefits? How is 'habituation' different to GET? What is better - short rests of near complete sensory deprivation or consistent day-long reduction (e.g. migraine glasses and noise attenuating earplugs). Should patients who are not overtly phono/photophobic be recommended stimuli reduction?

- Digestive pacing: Could an elemental or semi-elemental (passive absorption) diet allow severe pts to conserve energy otherwise spent on digestion. I wonder if consuming predigested nutrients as opposed to a steak could be helpful. Is grazing/drip-feeding better or intermittent fasting/bolus dosing? What about benefits or bowel rest vs. deconditioning of the digestive tract?

- Mobility aids: This is more for a moderate pt... when to advise an electric wheelchair?

- Promote sickness behavior: I wonder if using depressant meds to create a sense of fatigue (e.g. beta-blockers) could be helpful in discouraging pts from overdoing it. I wonder this because I hear about so many pwME using Adderall, creating a false sense of energy, and then crashing. What if you did the opposite?

 

[Jonathan Edwards]

Evidenced based management advice I wish a doctor could advise me on:

Interesting list.

 

[Hoopoe]

- Orthostatic stress: How to position bed? Inclined for some orthostatic stress or elevate legs to minimize orthostatic stress.

The advice to elevate the head end of the bed by 10 degrees is given for POTS. I tried this several times but it seems to make my sleep worse. I suspect it causes an increase in heart rate which reduces sleep quality.

Elevating the legs often leads to improvement within seconds (may take a minute at times too). Lately I've been waking up with heavy breathing in the morning, due to I suspect the hot weather and elevating the legs immediately improves things. On the other hand if you eliminate orthostatic stress entirely it will also decondition you. So it seems to be balancing act.

 

[mango]

@Jonathan Edwards If you haven't already seen it, the Norwegian ME Association has published a report on severe ME which is very much relevant to this discussion. Thread here.