Online survey of the use of Transcutaneous Nerve Stimulation for ME/CFS, 2022, Physios for ME

Trish said:
I confess I can't see the point of doing a survey for this or any other treatment. If we are to find out whether this treatment is effective it has to be done in a properly run clinical trial.
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Yes it's one of those where if you get a lot of 'this was dreadful, didn't help etc' replies we can all feel "glad I didn't waste time/energy/money on that", but if it you have a lot people say it changed my life' it leaves most patients frustrated that it's option that will not be a viable because cost is significant.

Amw66's point about positive results serving as a basis to encourage trials is sound, although I worry about the lack of any foundational hypothesis for why TVNS should be helpful for ME/CFS and the fact that the survey responders are both self selected and have been both motivated to meet, and been able to meet the cost of the equipment.

TVNS seems to be seen as a modern cure all for everything from headache, tinnitus, atrial fibrillation, post-error slowing, prosocial behavior, associative memory, schizophrenia, to general pain; cure alls are usually a good basis for more than usual scientific scepticism.

Critical Review of Transcutaneous Vagus Nerve Stimulation: Challenges for Translation to Clinical Practice

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7199464/

edit - following article is about implantation not TC. Sorry for bum steer.
Analysis of direct hospital costs before and 18 months after treatment with vagus nerve stimulation therapy in 43 patients

https://pubmed.ncbi.nlm.nih.gov/12270968/

further edit (computer and brain went down in unison !) attempted to highlight some errors in what I originally wrote - ended up deleting them. Anyway what's there now is I think sound.

Equipment costs from £150 to £500 new, only one seems to have FDA approval https://mygammacore.vytal.care/
 
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Nurosym; Wearable vagus nerve stimulation

https://nurosym.com/pages/d01?gclid=EAIaIQobChMI9aWB8Zi09QIVEJntCh3ZRAWWEAMYAiAAEgJHqvD_BwE

found this on their website

Dr David Strain and Long-COVID Treatment
About
In this episode we speak with Dr David Strain, Lead on Long-COVID for the British Medical Association and a key member of the Long-COVID Taskforce for the NHS.

Dr Strain covers the origins of Long-COVID and curious observations that point to possible causes and importantly, evidence based treatment options.

Dr Strain covers what has helped people gain symptom relief based on patient surveys. The research on immune-modulating drug treatments- their cost, scale and accessibility challenges. Concluding with commentary on Neuromodulation and how research has shown significant improvement in symptoms of brain fog, post exertional malaise and myalgia, highlighting it's potential as a very attractive treatment for Long-COVID.

Guest
Dr David Strain
Senior Clinical Lecturer at the University of Exeter Medical School
Lead on Long-Covid, British Medical Association
Member of the NHS Long-COVID Taskforce

Host
Dr Elisabetta Burchi
Clinical Psychiatrist
Parasym/Nurosym
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Dr Elisabetta Burchi 18:05

So in the pipeline, we mostly have immunotherapies. And with the caveat that they are very expensive and probably not scalable.

I would like to have your opinion about, seeing that we have talked about inflammatory states and this reactivity of the immune system that is clearly involved in the pathophysiology, even if we do not know exactly how.

So we have clearly immune drugs. But we may also think about Neuromodulation as a putative approach that we may use, i'm thinking about vagus nerve stimulation.

And we, actually at Parasym, we invested in this path. We ran a pilot study that demonstrated the use of [Nurosym], [targeted] vagus nerve stimulation worked in improving objective or subjective symptoms present in long COVID. And we are planning to run a randomised clinical trial at Imperial [London]. And what do you think about neuromodulation after everything you have well displayed about long COVID.
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Dr David Strain 19:35

So as you say that immune modulation seems to be a gold standard to fix the underlying cause.

But as you highlight, it's not going to be scalable, it's not going to be affordable.

And actually, for a disease that appears to be getting better over time. What we really want to be doing is controlling the symptoms as soon as possible.

And actually the only randomised control trial I've seen to date was all about singing was a really interesting one. It was singing lessons, it was deep breathing. And that demonstrated benefit very rapidly.

There's been a similar study that was performed looking at yoga, and their meditation and the exercises appeared to improve symptoms really rapidly. Yeah, people hypothesise. Okay, breathing around there, they're singing, that's going to help the breathing.

And yeah, if that was the main symptoms got better and agree with it. But actually, the main symptoms got better with a brain fog. They're the post exertional malaise and the myalgia.

Now, that's not from that breathing exercise alone. But we do know that controlled breathing and a singing process in the same way as a control breathing in the yoga classes are both very potent vagal nerve stimulators.

And what you're suggesting is, let's cut out the middleman let's take people who are not able to, or not well enough to go for this, these singing classes, who actually don't have the energy to go through a yoga class, and actually try the direct vagal nerve stimulation to see if that can give them the same effect.

And actually, biologically, that makes a lot of sense, it seems plausible. And it's something that would fit with the observations coming from elsewhere, we've seen in ME that there is actually seem to be a hyper adrenergic status for the people who are having their crashes.

And therefore a vagal simulator would seem to be a sensible choice in those patients.

And this long COVID, would then in the same group, [VNS] will actually make very attractive treatment option [for] patients who were most severely affected.
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video and full transcript here
https://nurosym.com/blogs/in-conversation-with/dr-david-strain-and-long-covid-treatments

eta:
CRG said:
Equipment costs from £150 to £500 new
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from a bit of searching it seems that 'Vagus nerve stimulators' are basically TENS machines/muscle stimulators with a different clip/cable.
see
https://tensmachineuk.com/vagus-ner...MI55_r5KG09QIV0u7tCh30fAzkEAAYAyAAEgJt1_D_BwE

( there are loads of TENs machines on Amazon for under £50)

so it makes me wonder how the others priced around £300 differ in terms of what they actually do.
 
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I think this type of inetrevention has had / does have an ongoing trial in australia and it does seem to make a significant difference for some. My memory may be dodgy?
@Penelope McMillan

There is a private facebook group started by one of Dr Myhill's patients who has gone from bedbound to being able to walk after decades of illness using a medifit device. Like anything it's not a one size fits all ( frequencies and duration seem to vary for peoplke and some do not benefit at all)
I wouldn't write it off though - it needs more work
 
This is a very chatty interview that Neurosym can use for their marketing.
I am a bit concerned that Dr Strain, if correctly quoted, is not aware that cognitive impairment is a HUGE issue, in ME.

"And then the key symptom that seemed to come through in long COVID, that's not such a big part of CFS was the brain fog. There's a difficulty focusing, difficulty concentrating, such that people's attention span wasn't getting more than 20 minutes or so."
 
MEMarge said:
This is a very chatty interview that Neurosym can use for their marketing.
I am a bit concerned that Dr Strain, if correctly quoted, is not aware that cognitive impairment is a HUGE issue, in ME.

"And then the key symptom that seemed to come through in long COVID, that's not such a big part of CFS was the brain fog. There's a difficulty focusing, difficulty concentrating, such that people's attention span wasn't getting more than 20 minutes or so."
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indeed
 
MEMarge said:
This is a very chatty interview that Neurosym can use for their marketing.
I am a bit concerned that Dr Strain, if correctly quoted, is not aware that cognitive impairment is a HUGE issue, in ME.

"And then the key symptom that seemed to come through in long COVID, that's not such a big part of CFS was the brain fog. There's a difficulty focusing, difficulty concentrating, such that people's attention span wasn't getting more than 20 minutes or so."
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wow, i didnt read that far. Thats grotesquely inaccurate! Is anyone in contact with him that can set him straight? I mean the extent of brain fog in LC i wouldnt know but for many of us its such a huge part, and lots of the time i'd be thrilled to have an attention span of 20seconds, never mind 20 minutes. Carer asked me if i wanted a drink the other day. It took several attempts for me to even understand what was being said, she may as well have been talking a foreign language.

We can do without Dr Strain spreading such falsehoods.
 
I think it would be useful to know if anyone actually knows what they are talking about when it comes to a possible role for 'vagus nerve stimulation' here.

I am hearing health care professionals talking about re-balancing parasympathetic and sympathetic nervous systems - it seems to be part of the new idea of 'dysregulation'. I have no idea whether anyone has any meaningful evidence on this but presumably they are talking about balancing parasympathetic cholinergic output and sympathetic adrenergic output.

But the clip on the ear has nothing to do with either of these because it will only stimulate a tiny bunch on input nerves that happen to travel in the same sheath as the cholinergic vagus fibres. The signal to the brain will not be the signal you get from stimulating the vagus on the way from lungs or heart to brain. Presumably it will stimulate nerves whose only function is to indicate to the brain that 'something is tickling my ear'. As to what effect that will have who knows? It might be an adrenergic fear response because it might be a wasp. It might be an erotic response, since ear nibbling seems to do that.

The gizmo literature makes it clear that it thinks the point is to stimulate input to brain for all forms of vagus nerve stimulation. But it then talks about the role of the nerve as if in terms of output.

I am pretty sure this is all pseudoscience yet again.
 
I've tried this and found no benefit to me. I did however, hook the TENS on my left thigh and used it over a period of about 3 weeks. I found a reduction of 'lactic' in that thigh when climbing stairs etc.

I discontinued but this continued over a good many weeks.
 
I am awaiting the medfit vagus nerve stimulator and hope it helps. Lots of people are saying it has. It cost me £60. I don't know whether it's supposed to help immediately and I will be in time to answer the survey.

One of the differences between my husband, who has LC and myself with ME is this throbbing at the base of the skull, the pressure in my head to the point where some areas feel numb, soreness in throat and fluctuating swollen glands with crimson crescents. I get a lot of cracks and creaks in my neck and skull by moving minimally, not relieved by moving more, followed by brief post nasal drip and temporary few second relief. I sometimes get huge relief from a cold flannel on the head and the brain fog clears. I think this is the low level inflammation in the brain after exertion being helped. He doesn't have any of this. I take an unscientific guess that this is because the virus attacked his lungs and I believe my virus attacked my throat and brain.
 
We have the Parasym, and it has not helped. It just irritated the tragus. Canada has now officially announced that vagal stimulation is an accepted treatment for Long Covid.

Yes, hard to see how the tragus can reach the whole nerve and brain.

But there are people who swear they have had improvement.
 
JemPD said:
"we've seen in ME that there is actually seem to be a hyper adrenergic status for the people who are having their crashes."

where's he got that from? in my experience its the opposite
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I'm as cynical about some of what he has suggested as you - and worry they have got the wrong end of the stick by presuming order of things and reasons from observing rather than getting insight from patient in the body.

Having said that, if I have to do something far far beyond my baseline. Say getting to an appointment away from home. Even talking for too long. It's necessary to move forward but even resting before, breaking it up etc isn't going to cut it. Particularly where that will involve motion and all the sensory stuff from that as well as exertion from being upright for too long, speaking, moving. THEN I will go through my I'm so tired I'm going to collapse phrase and push on engaging adrenaline. The time where on a short walk with a parent and said no I'm learning to stop when I know my body is saying 'enough' and sit on kerb to rest and break it up and I get shouted at.

Then, at that point I'm into overdrive that is basically adding to the PEM/crash/long term hurt at an accelerated rate. Calming it when you can doesn't do more than reducing the harm you'd cause by staying in the wired zone (doesn't undo the exertion), but it could be something. I'd think of it like putting aftersun on or even at best having a cooling shower after you've frazzled yourself - it'll still be blistered for weeks. For others a small exertion might be causing less of the 'total' I don't know (see below, quite a few I've met say they have 'anxiety')

I'm keen the idea 'how you cope with being exerted' isn't going to be the new/continued thing rather than telling other people to watch how they exert PwME (and that includes shouting etc). It is removing the nuance of how for some, certainly with more severe levels of ME all the strategies and devices in the world won't allow certain levels of exertion not to cause harm. I'm pretty experienced in being cooler cucumber than most under aggression. people in work used to note it. doesn't stop the event itself from being exertion. Could it prevent impact from either of these? I'm unsure. Do I imagine someone not very nice just saying to me 'well put your clip on if you are sensitive' as an excuse? yes.

Going to physio recently for a shoulder issue I don't know how much was true/tosh (losing faith in all atm but she is a safer one than others I've experienced in the past) when due to the exertion in getting there she would note that there were parts of my back she couldn't go near due to 'sympathetic response' as if she could see pulsating away. I'm sure she assumed and meant 'stress' - I knew I was exhausted and in 'borrowed time zone' as sitting in my car for a bit after journey isn't enough 'proper' rest to compensate for exertion of journey (I can't lie down in the warm with feet up in my car). Then I end up having to answer questions etc. Would an instant clip-on way of reducing that quicker/more to have better rest in that short time make some things more possible, or reduce the 'snowball' and size of crash? I'd be open to finding out, any tiny bit would help for unavoidable over-exertion when you are at the level I am and have appts etc. It doesn't make doing the exertion in the first place not exist though.

I'm glad physios for ME are doing these surveys (hopefully 'open' ones to gather these types of nuances) before someone is just going forward with bigger trials on something non-specific. I imagine this equipment is only as good as the advice on how it is best used. Which means a greater insight into how PEM, crashes, HR etc work than most seem willing to be able to go into detail-wise.

Quite a few PwME I've met seem to think they have anxiety with their ME, but you wonder about the over-exertion elevating HR being a mimic/triggering the anxiety bit vs the other way around. These are separate things yet again. But given these are getting popular ideas for people trying them then being able to define how and when they do work and on whom is a lot better than the BPS coming in with the lowest common denominator 'storytelling' that broadbrushes everything too. It's a pet hate when something helps 40% of people a lot, and medicine chooses to run trials for heterogenous groups without drilling down and declares a 10% effect for all.
 
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JemPD said:
wow, i didnt read that far. Thats grotesquely inaccurate! Is anyone in contact with him that can set him straight? I mean the extent of brain fog in LC i wouldnt know but for many of us its such a huge part, and lots of the time i'd be thrilled to have an attention span of 20seconds, never mind 20 minutes. Carer asked me if i wanted a drink the other day. It took several attempts for me to even understand what was being said, she may as well have been talking a foreign language.

We can do without Dr Strain spreading such falsehoods.
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I hate the term brain fog. Tome it feels so naughty because there are specific types of cognitive impact that are all very different and easy to differentiate and describe to someone who is actually interested.

Brain fog sounds like reducing cogntive fatigue when I have had too many complex questions, talked for too long, sensory from a film that was too hectic, eyes not working from looking for too long, can't wake brain up at all from a crash ie can't get conscious (which feels like low cortisol) under something they want to make sound like depression. To me it is more like stroke effects. WHy aren't they concernd about 'my anomia today' and just ignore how they can be patient with me on that but instead want to utter it off as brain fog as if I can't think at all and 'get confused'. I can't answer your complex question fast because you loaded all the work onto me, it's 5 parts of work hearing it understanding it working out what it means and the answer then finding the words to reply - and you want it fast due to impatience or it is 'fog' in a generic deficient can't think properly way. that makes me feel unsafe and scared because I know what people do to anyone they can suggest is deficient - not being able to reply fast isn't the same as not thinking as well as they do when adjustments are made.

just like they want to make someone who is needing to lie down or they will collapse and ends up being put in an impossible situation engaging their emergency situaiton and looking 'hyper' as anxiety.

what's happened to the world where anything these days is now turned from being a logical situational and scientific analysis of where the issue actually is, into label the person with whatever - it looks a bit squiggly so call them foggy. No room for the old days of people being expected to understand and it being part their responsiblity to not exacerbate someone else or be impatient. If they talked fast with hard questions to an old male stroke patient then as they were trying to work out the answer just said 'oh well you've got fog' I'd be surprised and shocked too.
 
bobbler said:
I'm as cynical about some of what he has suggested as you - and worry they have got the wrong end of the stick by presuming order of things and reasons from observing rather than getting insight from patient in the body.

Having said that, if I have to do something far far beyond my baseline. Say getting to an appointment away from home. Even talking for too long. It's necessary to move forward but even resting before, breaking it up etc isn't going to cut it. Particularly where that will involve motion and all the sensory stuff from that as well as exertion from being upright for too long, speaking, moving. THEN I will go through my I'm so tired I'm going to collapse phrase and push on engaging adrenaline. The time where on a short walk with a parent and said no I'm learning to stop when I know my body is saying 'enough' and sit on kerb to rest and break it up and I get screaming launched at me telling the street 'have I not eaten, I'm being ridiculous, you cause all this yourself!!!' to all the streets where I live. I've kindly paraphrased. Well you get the pic, no rest at that point when body would need it and instead exertion.

Then, at that point I'm into overdrive that is basically adding to the PEM/crash/long term hurt at an accelerated rate. Calming it when you can doesn't doe more than reducing the harm already caused. the screaming at me was exertion that harmed me. I'm keen the idea 'how you cope with being screamed at when collapsing' is going to be the new thing rather than telling the nasties to stop hurting people at their most vulnerable stage. I'm pretty experienced in being cooler cucumber than most under aggression. people in work used to note it. doesn't stop the event itself from being exertion. Could it prevent impact from either of these I'm unsure?

Going to physio recently for a shoulder issue I don't know how much was true/tosh (losing faith in all atm but she is a safer one than others I've experienced in the past) when due to the exertion in getting there she would note that there were parts of my back she couldn't go near due to 'sympathetic response' as if she could see pulsating away. I'm sure she assumed and meant 'stress' - I knew I was exhausted and in 'borrowed time zone' as sitting in my car for a bit after journey isn't enough rest to compensae for exertion of journey. Would an instant clip-on way of reducing that quicker when you can't lie down and rest make some things more possible?

If fools can get their head round undoing their blind alley where they've rewritten their knowledge to think the only reason for increased HR etc comes from the mind, and can manage to work out when reducing HR is actually going to help and when someone is in a situation where they'd be stranded without engaging the adrenalien to get to the train, scrape into the taxi and then sleep for a week finally then great.

I'm glad physios for ME are doing surveys (hopefully 'open' ones to gather these types of nuances) before making the mistake of going forward with something non-specific. I imagine this equipment is only as good as the advice on how it is best used. Which means a greater insight into how PEM, crashes, HR etc work than most seem willing to be able to go into detail-wise. Less impressed by anything that sounds slapdash and reels off generic mechanisms without feeling confident they've blueprinted them against real life events and what actually is going on etc.

Quite a few people seem to think they have anxiety with their ME, but you wonder about the over-exertion elevating HR being a mimic/triggering the anxiety bit vs the other way around. These are separate things yet again. But given these are getting popular ideas for people trying them then being able to define how and when they do work and on whom is a lot better than the BPS coming in with the lowest common denominator 'storytelling' that broadbrushes everything too. I just hate when something helps 40% of people a lot, and medicine chooses to run trials for heterogenous groups without drilling down and declares a 10% effect for all.
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sorry i wasn't able to read all of your post.
But i understand you are pointing out the issue of adrenaline surges after/during massive over-exertion, or in crisis when we use adrenaline to do what is necessary, which leads to a massive crash?

And i experience that - thats what i meant by thinking it's the opposite from what Dr Strain said - i read it as him saying that the hyper-andrenergic state is during the crash. Like the adrenaline spike is part of the crash itself. Whereas in my experience the adrenaline spike holds off the crash.... at least for a while.
 
JemPD said:
sorry i wasn't able to read all of your post.
But i understand you are pointing out the issue of adrenaline surges after/during massive over-exertion, or in crisis when we use adrenaline to do what is necessary, which leads to a massive crash?

And i experience that - thats what i meant by thinking it's the opposite from what Dr Strain said - i read it as him saying that the hyper-andrenergic state is during the crash. Like the adrenaline spike is part of the crash itself. Whereas in my experience the adrenaline spike holds off the crash.... at least for a while.
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Yes, sort of, I didn't explain it well there are circumstances where you cannot rest as you need to and pushing through means adrenaline (which you might need). I agree with your differentiation - it happens because you've gone way over baseline but the crash, and the size of what it will be, is affected by how long that bit is. Ok I've thought about it more and think it is crashing and still being under exertion at the same time - the after-bit is the 'PEM-->crash' when I'm defining how long I'm 'out of operation', what he is seeing is the crash where you cannot rest (like migraine and still in cinema/meeting/loud music or 'zinging from that'), and 'afterburn'? Ohh we need some really could terminology and diagrams drawn up to describe this to others and even communicate to ourselves!?:wtf:

Bitten off more than I can chew a bit as was trying to 'combine' a lot. Asking me to summarise is a big ask. I'll try - nope failed, but did do headers etc. in essence there are factors that mean train is leaving station with or without us.

FOR ME PERSONALLY:
1. I'd be worried/intrigued if I was in 'emergency situations' e.g. a train station in adrenaline as 'on-empty' or being shouted at, and put the clip on, whether I needed that adrenaline to keep standing/get me home/save me (just like cortisol would step in if we had any spare) - it long-term saves a worse situation.

2. BUT I could use it to reduce HR/adrenaline after I finally get home/to safety from these situations faster ie start rest earlier, or in e.g. getting to (still above baseline but less so than above), then having, a local appt to reduce HR after journey quicker if I'm in my car and resting between these on a cold day.

3. I basically had to do this to do everything I did - degree, exams, social, work. We need to understand that in a world where people short term choose to earn a living destroying their health that might be the best option they have health-wise. If this adrenaline-usage is needed to keep job we've got some ethical/logistical dilemmas. PwME can't be shoved into the behavioural 'live with a reduced life' solution forever, this is just another stick to make it our fault/'lifestyle choices' and send us back to 'think better and expect less' therapy.

4. This fills me with terror because I'm one of the most vulnerable people to this sort of thing getting manipulated and co-opted. Even the good situations we are talking about reducing the small amount added by 'after-effects' that you try and use meditation for, I'd be surprised if it removes the PEM from the exertion itself (but many might like to pretend its another reason they don't need to give leeway to PwME).

5. From what I have seen, many PwME are already interested in this AND/OR many more than you might think I've spoken to believe they have anxiety (which shocks me and seems to have mixed reasons). I'll car park that one to expand on if you want me to - I think it's a mixed bag of interpretation. And, because of those who are 'into' the anxiety thing (or have other factors that means it works for them or gives them hope), many from the ME background will happily back it up because it works for/sounds like them so they will assume they are helping all of us.

THOUGHTS ON THIS PIECE OF RESEARCH:
My point/conclusion was about being glad PhysiosforME is 'getting in first'- because I can see someone else will if they don't and they are the closest ones to be likely to do real science. And doing an 'exploratory' research first is the way it is supposed to be done in order that design of anything bigger is fit for purpose. This 'calms the sympathetic system' which could have a lot of different causes - and be attributed all sorts of ways in the wrong hands. I'm hoping they are interested in the longitudinal and qualitative responses of individuals to provide insight first. And focus on 'context' and advice on when and how it is useful in relation to exertion/PEM as the few who understand that.

If physiosforME get in first and publish, in theory it should set the literature off on a better path where it is hard to justify when it is known there is another dependent variable involved not accounting/controlling for it. It could also stop the 'riffing on mechanisms' below and insert actual substantiated concepts/reasons. Maybe even set the tone that it is how it is used/science of the PEM/illness etc.

Let's hope they do this right and get out of the blocks very strongly. I personally think we therefore need to back them/work with on this (getting messaging, paradigm, mechiasms clear) big time .

RISKS OF DOING NOTHING:
[As well as other issues,] ME research has been a victim of generic-trials-first tending to be 'lowest common denominator' and 'mixed backgrounds/heterogeous on factors that could be relevant'. Good research will have different groupings or cluster analysis - e.g. should 40% of participants respond really well to this and the rest minimally so. A lowest common denominator trial sees little benefit in fishing this out and suggests that all participants get a 9% benefit and says it works for all etc.

Worse, if said research isn't interested in using science to suggest what the mechanism is (real science is deduction-induction-deduction and so on), they just 'riff' and stick a label on it as 'increased sympathetic is always anxiety' (which is sadly the message that medicine+allied seems to being fed in the last few years).

It still makes me feel queasy given how many medics (pushed by BPS) in the last year seem to now believe 'sympathetic system' is 'caused by the mind' only, and that no 'stress' is external and can't be controlled 'internally'. It will be a biggie for all sorts of illnesses therefore and come at us from the 'generic' anyway if we don't use it to link directly to exertion. I think BPS are targeting PEM/PESE btw because it was the kryptonite on their ideology so turning it all into 'increased sympathetic' well..
 
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