IACFSME 2022 Virtual Medical Conference: Day 3 Presentations: 29 July (9 am to 4.40 pm EDT)

[duncan]

I think many of PWME's symptoms are perceptions of feelings without the physical/chemical abnormalities that typically cause them. It probably only takes one misfiring neuron to produce the perception of lethargy, or pain in some part of the body, or some other such symptom.

Symptoms as perceptions of feelings? Perception of pain? Perception of lethargy? Without physical abnormalities that typically cause them? This framing is troublesome for me.

 

[Mij]

I don't doubt that persistent Lyme disease spirochete may have lingering consequences on the CNS, but an autopsy might be the only way to prove it.

Enterovirus was found in the brain tissue of a pwME in a study. All blood tests showed negative.

 

[Creekside]

Perception of pain? Perception of lethargy? Without physical abnormalities that typically cause them? This framing is troublesome for me.

I had, and still have depending on various factors, the perception of muscle aches in my front thigh muscles. I'm pretty sure that there's nothing physically or biochemically wrong with those muscle groups; it's just mis-processing of signals from those muscles that I perceive as pain. LDN blocked that perception effectively, but I doubt that it was doing anything to those muscle cells. Likewise, acupuncture also blocked that perception of pain, even though the needles were not near those muscles.

There is probably lethargy caused by specific chemicals (fatigue poisons, whatever), but those probably work by triggering some neurons that in turn give a signal of 'feeling lethargic'. I expect that if you could identify and trigger specific neurons at will, you could push a button and the patient would feel lethargic, or energetic, or achey or hot or cold--all without the physical factors that normally cause those symptoms. ME might be altering brain cells in ways that change our perceptions in ways that we normally expect from certain physical factors. How can we tell the difference?

 

[duncan]

I had, and still have depending on various factors, the perception of muscle aches in my front thigh muscles. I'm pretty sure that there's nothing physically or biochemically wrong with those muscle groups; it's just mis-processing of signals from those muscles that I perceive as pain. LDN blocked that perception effectively, but I doubt that it was doing anything to those muscle cells. Likewise, acupuncture also blocked that perception of pain, even though the needles were not near those muscles.

Kind of like false pain beliefs. Or false illness beliefs.

You wording is worrisome because of obvious reasons.

 

[duncan]

I don't doubt that persistent Lyme disease spirochete may have lingering consequences on the CNS, but an autopsy might be the only way to prove it.

Lyme has been found in the brains of many patients. Perhaps the most famous was Vicky Logan. The medical system doomed her, and denied her the only thing that was keeping her alive: abx. And yes, the only real way to prove it is autopsy, as is it did with Vicky Logan even though I think they had enough proof with her CSF samples.

Enterovirus in the brain does not surprise me. I fear there are many pathogens crossing the BBB, and our testing for them is a travesty. And it's only made worse when people of influence in the medical community specifically warn researchers and clinicians not to test tissue samples of pwME, which as most of us know happened some ten or so years back.

ETA: So yes, I think we would be prudent to keep an open mind about persistent infection being behind ME/CFS, at least in some cases.

 

[Creekside]

Kind of like false pain beliefs. Or false illness beliefs.

No, definitely not beliefs. There are various well-known disorders of perceptions. Some people might smell colours or hear textures. Some people are overly or underly sensitive to normal inputs. Phantom pain is the triggering of neural pathways that served a part of the body that no longer exists.

Touch the point of a needle with your fingertip. That triggers cells in your skin which trigger neurons, sending a signal along a pathway to your brain, where some other neurons process that, ending up with one, or a few, neurons that trigger the mental perception of 'feeling' a point. If you skipped most of that process and just directly triggered that one or a few neurons in your brain, you would 'feel' exactly the same sensation. If ME is lowering the trigger threshold of the neurons that 'feel' pain in my thigh muscles, so that normal signals from those cells trigger an abnormal response, I would 'feel' pain there, even though there was no physical cause in those muscles, and not even abnormal signal levels from them.

The difference between misperception and belief can probably be shown via PET scans or functional MRIs or other such techniques. I do agree that care needs to be taken to avoid the misunderstanding of perception disorders vs psychological ones. There's another thread going on now about how language affects scientific studies. Maybe perception disorders really would be better understood in Klingon.

 

[duncan]

Maybe, @Creekside. That's an awful lot of misperceptions, though, an awful lot. Many of us have a host of symptoms. It seems like a complicated way of explaining what's going on. But perhaps it is the right way.

My money is on persistent infection, or busted immune system. I get too many things wrong anymore, though.

 

[Tom Kindlon]