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

[bobbler]

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 wonder whether this is another issue with genericising everything under 'brain fog'. 20mins seems a feasible timespan for someone to be able to say talk and answer questions before cognitive fatigue kicking in - at which point it isn't my attention that is the issue but being able to find words to speak or think of answers to what are complex questions (I'm always shocked at how medics aren't trained in what is complex vs simple wording given they must all deal with stroke patients or other issue -I thought that would be a standard adjustment they should have learned). I just really need to go to sleep in a dark quiet room at that point.

I'd find it offensive if they suggested this was 'attention span' - which isn't brain fog OR cognitive fatigue. Attention span is ability to listen, watch etc - which certainly isn't measured by whether you can answer a difficult question. It will also vary much more throughout a day as you get tireder or have good points/bad points. As you say it could be down to seconds but 'renew' ie reading a book and end up with starting same para 10 times because you never get to the end of it.

 

[Tara Green]

I missed the survey unfortunately. But I said I would update. The vns is going in my definite 'yes it helps' pile. Now then, there isn't really an explanation for this. Plus, I have also discovered a product called Halo and this has also been a definite help even though I wouldn't have said I was dehydrated due to urine colour, it has helped PoTS. So already scientifically, the thing is skewered and my opinion means nothing.

It's Spring and this is usually my best time of year. Many time I used the VNS and it seemed to do nothing. It doesn't help when I had it on a mild pain setting in fact it made it worse. Just a nice relaxing setting is best. Every now and again during it I would get a very blissed out, mellow feeling. For me, it was worth the £60 just for one of those experiences. Colours became beautiful and I noticed things in the room that looked suddenly. amazing like my raggedy coat. This just happened regardless of when I was thinking this is doing nothing. I think that is the shift over and the system relaxing.

 

[bobbler]

I missed the survey unfortunately. But I said I would update. The vns is going in my definite 'yes it helps' pile. Now then, there isn't really an explanation for this. Plus, I have also discovered a product called Halo and this has also been a definite help even though I wouldn't have said I was dehydrated due to urine colour, it has helped PoTS. So already scientifically, the thing is skewered and my opinion means nothing.

It's Spring and this is usually my best time of year. Many time I used the VNS and it seemed to do nothing. It doesn't help when I had it on a mild pain setting in fact it made it worse. Just a nice relaxing setting is best. Every now and again during it I would get a very blissed out, mellow feeling. For me, it was worth the £60 just for one of those experiences. Colours became beautiful and I noticed things in the room that looked suddenly. amazing like my raggedy coat. This just happened regardless of when I was thinking this is doing nothing. I think that is the shift over and the system relaxing.

Interesting. I can see why (noting the below) you've focused on the bit that probably is unusual enough and time-specific enough it is likely to be the VNS. How interesting that it makes colours more beautiful etc.

At the risk of diverting topic-wise what is Halo?

and PS I completely relate to that issue of someone asking for feedback on one thing you've 'tried' and (for me when it is feeding back to a medic who wants a straight answer) you know that other meds or things have changed and your day-to-day has to incorporate things they think are small but are huge for ME, like 'well that day I was worse but the builders opposite had a pneumatic drill vibrating my house so..' or 'compared to before I start this 3mnths ago, well I was using more than my baseline to scrape to physio once a fortnight when severe then so..'.

I just feel 'sigh' because 'it's complicated' is the intro for the response and you know that will cause the 'switch off' when it really needs the 'switch on' attention-wise from someone else (people seem to have entitled themselves to that more since lockdown which fascinates me) - making the exertion even harder and more futile.

 

[Tara Green]

Interesting. I can see why (noting the below) you've focused on the bit that probably is unusual enough and time-specific enough it is likely to be the VNS. How interesting that it makes colours more beautiful etc.

At the risk of diverting topic-wise what is Halo?

and PS I completely relate to that issue of someone asking for feedback on one thing you've 'tried' and (for me when it is feeding back to a medic who wants a straight answer) you know that other meds or things have changed and your day-to-day has to incorporate things they think are small but are huge for ME, like 'well that day I was worse but the builders opposite had a pneumatic drill vibrating my house so..' or 'compared to before I start this 3mnths ago, well I was using more than my baseline to scrape to physio once a fortnight when severe then so..'.

I just feel 'sigh' because 'it's complicated' is the intro for the response and you know that will cause the 'switch off' when it really needs the 'switch on' attention-wise from someone else (people seem to have entitled themselves to that more since lockdown which fascinates me) - making the exertion even harder and more futile.

It really is difficult with a fluctuating condition and all the life variables day-to-day and month to month plus a delayed PEM to pin down.

Halo hydration pink lemonade is an electrolyte solution with vitamins and minerals.

I also want to try the higher dose flushing niacin but confess I've been apprehensive and scared in case it affects my breathing. Will try it soon hopefully.

 

[bobbler]

It really is difficult with a fluctuating condition and all the life variables day-to-day and month to month plus a delayed PEM to pin down.

Halo hydration pink lemonade is an electrolyte solution with vitamins and minerals.

I also want to try the higher dose flushing niacin but confess I've been apprehensive and scared in case it affects my breathing. Will try it soon hopefully.

Thanks for that on the Halo, I shall have a look into it. Totally get the apprehension with trying something new too. I haven't tried niacin (or anything much beyond B12 injections, Vegepa etc) - partly also because I find all the info quite overwhelming and can't keep up, so you have my admiration for getting that far! I'm always intrigued though to hear experiences as it helps me to maybe narrow down what's worth looking into - good luck with it if you give it a try on the higher dose x

 

[Hutan]

Just catching up with this thread. I'm really concerned about what David Strain was saying about the singing treatment. And concerned that he and @PhysiosforME are giving some credibility to this tragus clip commercial product.

We've discussed this treatment here:
Vagus Nerve Stimulation

Here's part of the discussion:

This VNS stimulator being discussed is clipped to the tragus, the bit of the ear that is pierced below.



While the tragus is a convenient place to clip something to, it's probably not a very good way to stimulate the vagal nerve.

The evidence for the utility of invasive Vagal Nerve Stimulation (iVNS) (that is when a stimulation device is implanted beside the vagus nerve in the neck) is quite weak. Studies tend to be either very small or unblinded or both. Improvements are usually relatively modest and could be a placebo response. iVNS is claimed to work in a wide range of conditions, most of which rely on patient reports to assess improvement such as depression and anxiety (i.e. subjective reports).

The evidence for transcutaneous VNS is weaker still, with the evidence for VNS achieved by a clip on the tragus as opposed to another part of the ear even weaker.

It is not at all certain if a clip on the tragus of the ear is able to stimulate the vagal nerve adequately. In fact, it isn’t even clear if the vagal nerve is stimulated at all. Knowledge of neuroauricular anatomy is described as 'sparse' in the paper linked above, and the tragus does not appear to be a particularly well enervated by the vagus nerve.

The product is expensive, and there is very little basis as to why it might work.

 

[Hutan]

On the singing idea that Dr David Strain was in favour of:

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.

Was the study he is talking about the ENO Breathe study? discussed here:
An online breathing and wellbeing programme (ENO Breathe) for people with persistent symptoms following COVID-19:.., 2022, Phillip et al
Because it did not show much in the way of benefits.

Singing as a treatment was discussed more here:
Singing and gargling

It's hard to understand how people like David Strain can be so uncritical when it comes to evaluating possible treatments. Is there any way we can get him to visit the forum to check out reviews of treatment before he endorses them?

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.

He seems not to understand that the people who are recovering from LC will improve regardless of whether they are singing or not. And that there are some people who won't recover.

 

[Lou B Lou]

From Physios for ME 3rd Anniversary Statement


'5. An international interview-based study exploring the use of transcutaneous vagus nerve stimulation by people with Myalgic Encephalomyelitis

Furthering the work from our survey, we have so far interviewed 8 people with ME who use vagus nerve stimulation. Data collection is ongoing, and we would like to talk to more people, particularly those who did not find any benefits. Please contact Dr Nicola Clague-Baker if you would like to be interviewed online about your experiences: nicola.baker@liverpool.ac.uk '

https://www.physiosforme.com/post/physios-for-me-celebrate-our-three-year-anniversary


* My underlining

 

[Sbag]

The product is expensive, and there is very little basis as to why it might work.

there is a non branded option which works out at about £60. So I think some people think it’s worth a punt at that price. If going for the branded machine at more like 600 then it would be a no

 

[PhysiosforME]

Thanks for all the comments on this. I have to confess that I (Michelle) know very little about it but will share all this info with Nikki and Karen who are leading on this.