Orthostatic intolerance and neurocognitive impairment in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gaglio … Jason, 2022

Objectives

The Institute of Medicine (IOM 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington: The National Academies Press) suggested new criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which requires an endorsement of either neurocognitive impairment or orthostatic intolerance (OI) in addition to other core symptoms. While some research supports the inclusion of OI as a core symptom, others argue that overlap with neurocognitive impairment does not justify the either/or option. The current study assessed methods of operationalizing OI using items from the DePaul Symptom Questionnaire (DSQ-1 and -2) as a part of the IOM criteria. Evaluating the relationship between OI and neurocognitive symptoms may lead to a better understanding of diagnostic criteria for ME/CFS.

Methods

Two-hundred and forty-two participants completed the DSQ. We examined how many participants met the IOM criteria while endorsing different frequencies and severities of various OI symptoms.

Results

Neurocognitive impairment was reported by 93.4% of respondents. OI without concurrent neurocognitive symptoms only allowed for an additional 1.7–4.5% of participants to meet IOM criteria.

Conclusions

Neurocognitive symptoms and OI overlap in ME/CFS, and our results do not support the IOM’s inclusion of neurocognitive impairment and OI as interchangeable symptoms. Furthermore, our findings highlight the need for a uniform method of defining and measuring OI via self-report in order to accurately study OI as a symptom of ME/CFS.

https://www.degruyter.com/document/doi/10.1515/em-2021-0033/html

 

This research begs an important question with regards to the new NICE diagnostic criteria: how many people who have cognitive impairment also have orthostatic intolerance?

 

The DecodeME questionnaire asks about symptoms of both, albeit without asking specifically if someone has orthostatic intolerance.

 

It's kind of a blurry line for me personally. My cognitive energy deficit started after I pushed myself into PEM from exercising over and over again years ago. Now I have orthostatic intolerance that started after a relapse in 2021.

They both have a different feel to it though.

 

Likewise. Before I was pushed to exercise I did not have anything orthostatic, my condition was constant regardless of laying down, sitting or standing up. After the whopping crash the exercise caused that changed and I have had orthostatic problems. In me at least I can say the orthostatic intolerance is obviously a direct result of the damaging treatment the NHS put me on and I did not have it until they damaged me irreparably.

 

Does the impairment also affect memory? Mine does not.

 

Yes a big part of the intolerance is headaches and brain dysfunction. I loose coordination, start dropping things, forgetting why I am in the kitchen etc etc.

 

I suppose it frequently depends on which parts of the brain are impacted. I would think it's usually involving areas of the brain that effect both symptoms, so it seems as if they are related - and, in fact, they may be in the sense that they both may be downstream brain issues.

 

I don't think limiting this to posture makes sense. My brain fog does not vanish if I am laying down and I've never heard anyone say that so it's at least rare. It's definitely worse if I'm standing up, but it doesn't resolve by being horizontal. It's an aggravating factor for sure but not the cause.

The most common sense explanation is blood flow to the brain, still inadequate regardless of position but made worse by upright posture, even worse by requiring leg work, but likely always inadequate.

 

My memory is not even 10% of what it used to be. Not everyone, but when it does it's massive.

 

Important note in this study about what neuroimaging does:

"collect data only in the supine or seated positions."

Other medical testing such as an ECG or an Echo, never pick up POTS, or OH.

IME, repeated comments about extra fast or strange heart beats did not trigger any testing relevant to POTS or OH. Finally, a test nearly 2 decades into my ME revealed POTS.

I hope the testing delay I experienced has significantly shortened. Although, I have my doubts.

 

That could be a distinguishing factor though? Mine pretty much vanishes after I lie down. Some refer to it as part of PEM, but for me it's not delayed and replenishes within half an hour.

 

Damn, that would be so useful to study. To know what changes and how quickly. So much information we could have if only it were done right.

Do other symptoms improve? Very likely there are several types and factors involved.

It's also weird how after sleeping, essentially being horizontal for several hours, it isn't any better. Or is it in your case? Most people I see report mornings being the hardest, after hours of prolonged planking.

 

I went into more detail on this issue in one of Leonard Jason's questionnaires b/c the way he posed the question needed more explanation.

I'm not reading or talking during sleep so my brain isn't using up the same energy? I sleep fine but mornings are the hardest for me if I'm using my brain for reading, processing information or talking too much. I need to lie down frequently to recover.

I can be upright longer in the evenings.

 

Me too! I must have ME! Oh right, I do. I just forgot.

PEM made me want to lie down, but doing so didn't affect my PEM.

 

I don't think I can be very definitive here. Sometimes laying down helps, I can feel I need to lay down, I do so for an hour or two and I feel better. But paradoxically I wake up feeling dreadful and often with pins and needles in my hands and arms and it can take me a while to get going. On a morning sometimes standing makes me feel better, sometimes worse and others no different. Its rare I wake up with a spring in my step but it happens, then it disappears within minutes of actually moving about like the battery just went from 1% to 0% again. There are moments where laying down seems to help and moments when it doesn't and I don't know how to distinguish between them, potentially in time I might recognise a difference in the signs as I have done with other signs my body gives me. I always have neurological problems regardless, its not just orthostatic intolerance, but there is definitely an element of orthostatic issues that can worsen it. That like I said isn't very definitive.

 

That's why we're still waiting for clinical markers: none of our symptoms are clearly defined. We know what they feel like, but communicating that to someone else is problematical. Unfortunately, that leads to 'experts' who come up with theories based on misunderstanding of our symptoms. ME doesn't have 'fatigue'; it has a 'fatigue-like' symptom. Our sleep isn't unrestful; we have a symptom that feels something like not having enough sleep, but it simply isn't reduced by even good quality sleep.

 

My head feels much clearer when I lay down. For some years, my OI was quite bad even when supine.

For me, POTS is not just part of PEM. I have it everyday, much, if not all of the day.

I wonder if PEM for me is often partly caused by being upright for a few hours. For example, a fairly quiet day, but one spent in town getting groceries etc., while my husband drives.

 

In the days when I was moderate, I would get severe cognitive problems like not being able to work out how to get home but it did not feel like POTS. From my experience, I believe symptoms resembling POTS are caused by dysautonomia which is part of the general ME brain problems due to a lack of available energy to work properly.

Standing takes a lot of work so it is possible to feel bad when upright and having a raised heart rate simply by a lowered anaerobic threshold while POTS is a more specific problem reflecting damage to the system that can be present in ME as well.
People with ME often don't meet the strict tests for POTS while having dizziness and weakness on standing which is why I think acknowledging the difference is important so people do not get excluded.

Sleep is a very active process that uses a lot of energy so it is no wonder people with ME feel bad in the morning. It is not at all like lying down to rest for a few hours. This is still too much ignored by medicine.

In the mornings I used to not be able to dress because I could not work out how to do it so being upright was not involved.

Lenny Jason often seems to miss exactly what ME is about and the DePaul Symptom Questionnaire is not as good as it could have been.

 

It must have been about 1986 when a cardiologist complained that there were problems with heart traces when patients had them done standing but they were doing done lying down and people were told everything was fine.

Ramsay and others said that all tests should be done when patients had been active, not sitting in the waiting room. I remeber the suggestion that they should be asked to go up and down a flight of stairs first!