Welcome to this episode of

Anaesthesia on Air, the podcast from the Royal College of an ethos.

My name is Anton Krige and I'm a consultant, intensivist

and anaesthetist at Royal Blackburn Teaching Hospital

and an honorary professor with the local medical school.

I'm also heavily involved in research within the NHS

and the management of patients undergoing

high risk major surgery.

today we're going to be discussing

the topic of,

ME and its implications for anaesthesia

and how, a patient resource document

was generated by the Royal College of Anaesthetists along along this topic.

I'm joined by Doctor Charles Shepherd

and medical advisor to the association.

And Helen Baxter,

an advocacy worker for the 25% ME group.

The background to this work

is that over a period of years, the Royal College of Anaesthetists

had been approached by multiple ME sufferers,

inquiring as to how anaesthesia would impact them

and that the information around this had been extremely limited.

This has resulted in the college,

setting up a working group

and the project to generate patient information and a patient resource,

to support patients who have ME

and are going to undertake the surgical journey.

I've got involved with this

after seeing an advert in the Royal College Bulletin.

looking for a clinician

who would take on the lead role in this project.

as already explained, I'm, I've been a consultant anaesthetist

for over 25 years, and, my personal journey involved

having one of my one of my three children, my middle child

develop very severe ME when she was eight years old,

and that lasted for three and a half to four years.

with her losing most of her primary school years

spent at home with home schooling, etcetera.

She's thankfully now back to full health and absolutely thriving.

incidentally, she qualified for the England School's

cross-country championship recently and has won a couple of league races.

So she's gone from the extreme opposite.

so that's been a great personal driver

for me to get involved and trying to put something back to this patient group.

combining both my

personal knowledge of the condition and seeing it firsthand,

along with my years of experience and knowledge, as an anaesthetist.

So we how this how this project unfolded is that it started off

by doing a thorough literature search to sort of identify

what the actual evidence is around the impact of ME and anaesthesia.

And in short, there is almost nothing

in the literature in terms of evidence base.

And the next step in this whole project was to organize a focus group meeting

and to do something that is quite novel for information documents developed

by the Royal College of Anaesthetists in making use of lived experiences.

By, individuals who’d actually experienced,

both having severe ME and undertaking a surgical journey

and they, they formed the underpinnings

of the sort of question and answer format of the patient resource.

And these patients then also gave very valuable

feedback on the draft documents that were,

generated off the back of the focus group meetings.

This podcast now forms one

of many social media launches of this patient resource document.

And at the time of this recording,

the official launch is going to be the following day.

So some of the, some of the,

key points that really were highlighted by our focus group

and the lived experiences were really just highlighting more

the things that didn't work so well for patients.

That really gave us a focus where many of these patients felt

that there seemed to be a general lack of knowledge

from both surgeons and anaesthetists about the condition in general,

and that their condition wasn't taken seriously

and wasn't really acknowledged as an actual medical condition,

with a lot of lack of understanding around the impact

that it could have, from surgery and anaesthesia.

Despite their concerns.

they also felt that it wasn't

really listed as an actual co-morbidity at pre-op

assessment visits, and there wasn't any real adjustment made for it.

And any particular planning around their ME

Other themes that arose were patients experiencing severe crashes of their ME

after anaesthesia, taking longer to come around,

not receiving

any particular special monitoring.

they, they saw that there was a lack of any written notes

about the, their specific needs and,

and any real communication

between the different hospital groups.

particularly features were being very sensitive to bright

lights, sounds and strong smells around the emergence from anaesthesia

and some had to wait for many hours on the day of day of operation,

which has a big impact in their ME when they have a very limited energy

envelope.

and some felt they were discharged too quickly

while they still have quite significant fatigue.

Many of them experienced changes to the patterns in their condition in the

in the, weeks and months afterwards, with crashes being quite frequent

and changes in pain levels and heart rates and blood pressure and so on.

So all of this gave us

a lot of ammunition to start to work on this patient resource.

So with that being said, I now want to really bring Helen into the conversation.

with her particular experience

around advocating for these patients

and, and their sort of experience in NHS care.

Helen, what would have been some of your experiences around these themes?

Thank you.

Anton.

Yes, I do recognize the experiences we heard in the focus group.

People's experiences of NHS care really does vary.

I mean, some do receive good treatment and and feel supported,

but others really don't.

Their ME is quite often just dismissed.

And it's important to mention that some people with ME/CFS

will have difficulty accessing primary care, let alone secondary care.

And as we know it can be hard to get a GP appointment.

But that becomes much harder when you need a home visit

and that can have a knock on effect.

It can lead to people presenting late to primary care with symptoms,

and the knock on effect of that is that they may require more complex surgery.

It's worth saying that some GP's may never encounter

someone with ME/CFS, and medical education at both undergraduate

and postgraduate level, is woefully lacking.

So the doctor may be unsure how to support patients with ME/CFS

and if they are unsure, I would suggest looking at the NICE guidance on ME.

There is also a CPD module online about ME so you can access that as well.

People with ME/CFS have also previously experienced stigma

quite often and I found from my personal experience

of advocating for people with severe ME/CFS that they're quite

wary of approaching allied health care professionals

because they expect to be dismissed.

so as an

organization, just like you, we're regularly approached by people,

people in our case with severe or very severe ME/CFS.

And I'll point out that the charity is called the 25% me group because at any one

point, it's estimated that 25% of people will be housebound or bedbound.

So they're categorized as having severe ME.

But they come to us asking for information about anaesthesia,

both themselves and something that they can give to their surgical team.

But up until now, there really hasn't been much to offer.

So I'm really pleased to see the ME/CFS and anaesthesia document

has been produced.

And combining that anesthetic expertise and the experience of people

with lived ME/CFS who had anesthetics.

I think that's a really good move.

Thanks, Helen.

That's fantastic information.

And you know, from what you said there, I can really empathize

with all my colleagues because until I had,

a personal trigger to get heavily involved in researching ME

in my 25 years as an anaesthetists I'd probably only ever encountered

1 or 2 patients with ME presenting for anaesthesia and surgery.

So it's quite natural that colleagues feel

ill informed around this and therefore vulnerable.

So I think this is a huge step forward in raising the profile

in education.

moving along, Charles,

I wonder if we could bring you in to just give all listeners

a bit of a better insight and education on what ME/CFS actually is

and how we would define it and what resources they can access.

Thank you Anton.

As you introduce me, I'm a doc with both personal and professional interest

in this subject dating back, just over 40 years.

when I developed this illness, like many people, I was a very fit young adult.

I was working in hospital medicine at the time.

I got a very nasty dose. of Chicken pox.

It was a chicken pox encephalitis, actually, from one of my hospital

patients, and went down with all the,

key symptoms of this, of this condition.

But no one could give me a diagnosis.

No one could give me any sensible advice on management.

and I'll come to a description of this, this illness in a minute.

but I'd just like to say how grateful we are.

To the ME association for working with the Royal College of Anaesthetists

on preparing this patient information for people with ME.

It's a very important precedent.

And we, as part of the NICE guideline and this part of a Department of Health

initiative called the DHSC Delivery Plan for people with ME/CFS.

we desperately trying to improve,

medical education of health professionals on this subject.

So I think this is very important precedent to work together

with, with patients, charities, to produce this information.

As I say, I've 40 years experience of this.

When I left medical school in the early 1970s.

the Middlesex Hospital, I was told this was hysterical nonsense.

ME [unclear] disease. Go away.

Forget about it.

You won't see a patient with it.

And in 40 years of dealing with this subject,

my colleagues, many of my colleagues in the medical profession

have been involved in a debate which has involved uncertainty,

disagreement, skepticism, sometimes even hostility towards this subject.

And this debate has gone on as to what we call it,

how we define it, what causes it and how we manage it.

And this has had a very negative, negative impact on the patients

with this illness.

It's led to people not being diagnosed.

It's late diagnosis, misdiagnosis.

And equally it's led to bad management in many cases or no management at all.

But fortunately I think we are now changing.

we've got a new NICE guideline.

there's a link to it, in the,

information booklet, which was published in 2021,

as part of the committee that produced this new NICE guideline.

And it sets out very clear recommendations on what to do

if you suspect someone has got ME, they're not recovering

from a viral illness, which is the normal, route into this illness.

We've got this DHSC delivery plan, which is covering education,

implementing the NICE guideline and, research as well.

And then we've got recognition

from the Medical Research Council that this is a very genuine

medical condition, which is very disabling and requires

proper biomedical research into cause, and treatment.

quick background

information then on, on what this is, what this illness is and how it presents.

We think at the moment the epidemiology suggests

that there's roundabout at least 250,000 people with this condition in the UK.

But interestingly enough,

new research paper came out last week

from the University of Edinburgh Chris Ponting's group.

looking at a different way of,

estimating the epidemiology and prevalence.

And Chris's, work is suggesting that the true figure

is probably nearer to 400,000 people in the UK.

And part of that, I think, is, is the reflect that at the moment, Covid

19 is possibly the major trigger

factor for ME/CFS at the moment in the UK,

and so we've got quite a lot of people with long Covid who are now

being transferred into a diagnosis,

of ME/CFS

[...] this figure of 250,000 as,

as Helen said, we've got a wide range of severity in this illness.

at the severe, very severe end.

we've got people who are obviously housebound, bedbound

and may even be tube fed.

But for most people with this illness, the other three quarters,

they are, not housebound, but it is an illness

which is having a severe effect on all aspects of quality of life for them.

they're not able to work,

they're not able to to participate in education.

And as Anton indicated, a significant

proportion of people with ME/CFS are children and adolescents,

and it has been estimated that ME/CFS is, one of the commonest causes,

if not the commonest cause of long term sickness absence, from school.

As far as the actual illness and its presentation is concerned,

most people as I have described

and I think that's probably what happens with Anton's daughter.

Fit young adults or children and adolescents,

they get a viral infection, they don't recover.

And that's what

happened to me.

And the the main key presenting features of this illness,

the diagnostic features which are used in the NICE guideline

are this very debilitating fatigue, which is activity induced.

It can be induced by both physical activity and mental activity.

Linked to that is is what we regard as the key

diagnostic feature, which is what we call post exertional malaise.

So in very simple terms, if someone goes to the limit

of what they can do physically or mentally on one day [or]

gets very near to that point, they have a delayed period.

And the following day they have a severe reaction,

a relapse of symptoms and general ill health.

following that, exertion on the previous day.

they have cognitive dysfunction with short

term problems with short term memory, concentration, attention span.

It's called brain fog.

If you're following the debate into long Covid, it's just the sort of,

problems that they, the people there have,

they have non-refreshing sleep is a very diagnostic feature.

So even though they may be getting

perfectly good night's sleep, they feel no better the next morning.

A particular importance to anaesthetists is the fact that they have disautonomia.

They have a problem

with the autonomic nervous system control, particularly of pulse and

and blood pressure, but also, bladder and bowel sometimes.

And this can result or does result in

most people having what we call orthostatic intolerance.

That's an inability to remain standing for, for any sort of period of time.

And also a significant minority, particularly again

in the children and adolescent sphere of this illness

have postural orthostatic tachycardia syndrome

where there's an increase in pulse rate,

in response to standing

and that that's particularly relevant obviously in, in anaesthesia,

because some of these people may be on, fluid

expanders, they may be fluid cortisone, they may be on

beta blockers to, to reduce pulse rate,

or they may be even on a drug like [unclear - Midodrine?].

So that's an important consideration when when assessing these patients.

finally, in relation to symptoms

this illness has a wide range of symptoms.

so I think in particular importance

in relation anaesthetics and anaesthesia, is the fact

that they have cognitive dysfunction so that they may have difficulty,

maintaining and information processing, being told what what's going on.

They have the disautonomia autonomic nervous system dysfunction symptoms.

As Anton has mentioned, they are often particularly at

the severe end are very sensitive to light and sound.

they have problems with, temperature regulation, possibly due

to a hypothalamic involvement, in this illness.

So, the, they're not good in cold or hot environments.

And that's obviously something of a relevance, in both surgery and anaesthesia.

and finally,

they are particularly sensitive

to drugs which act on neurotransmitters.

And one of the things we put into the NICE guideline, was to always

be very careful with these drugs and start with a low dose and work up gradually.

so if they're on antidepressant medication, if they're on,

analgesic medication, which involves, neurotransmitter function,

then that is something that they may well be sensitive to.

And the other drug that they do seem particularly sensitive to,

which is particularly relevant in dental anaesthesia is is adrenaline.

And our dental advisor at the ME Association

recommends that where possible they should be given,

an adrenaline free, anesthetic if they're having any dental work.

so that's, that's my quick round tour

of what ME/CFS is, Anton.

I don't know whether you want to pick up on anything.

there that we've missed out.

No that that was perfect, Charles.

I think some of the, particular implications around anaesthesia.

I think it's really important that disautonomia component,

particularly because some of the medications

they may be on, as you alluded to, will have implications to anaesthesia

or certainly need to be, thought about by the anaesthetist.

you mentioned Midodrine, which anaesthetist won't encounter very often,

and that's sort of a chronic medication to help increase blood pressure.

the fludrocortizone

may require anaesthetist to,

give additional steroid during anaesthesia

because they're on some long term fludrocortisone.

One one of the other medications that isn't used

very often but could, can be used in some cases.

This disautonomia or [...] is pydridostigmine.

And that also has implications because that can affect

the neuromuscular blockers that are used during general anaesthesia.

Sometimes.

And different categories of neuromuscular

blocking drugs are affected in different ways by people

who are on chronic pyridostigmine

and you already mentioned the beta blockers,

which obviously we would need to be aware that they impacts on heart rate.

and an associated medication

that sometimes is used for these patients is something called ivabradine,

which again an anaesthetists wouldn't very often have encountered

because it's usually only used quite uncommonly in cardiac disease.

so that's really useful information.

We can also find that some of these patients are on unlicensed

medication as well.

Things like low dose naltrexone and also nimodipine.

So that needs to be factored in that they are using them off label.

And also a number of supplements as well.

People with ME can be taking those supplements.

But they may be obtaining these off label drugs, not from their GP.

Their GP may be unaware in some cases that they're on low dose

naltrexone because they're getting it from an online pharmacy.

Yes, and low

dose naltrexone is is an important medication to raise

because firstly the anaesthetist in the hospital

they won’t find that in the British National Formulary

because it's an off license compounded medication, it is a very safe medication

and a very interesting medication, but there are implications for anaesthesia.

just very briefly,

this this this drug is in is a micro dosage of the.

Well known drug called naltrexone, which is used in it,

which does appear in the British National Formulary.

And that's conventionally used to help patients withdrawal

from chronic opiate use, you know,

possibly heroin abusers, etcetera.

but it was discovered by accident that it has other

possible beneficial effects when it's used at a much smaller dosage.

So the normal dose of naltrexone is 50mg, but typically the dosage is

used as low dose, naltrexone is anything from 0.1mg up to 4.5mg.

So it's a maximum of sort of a 10th of the standard dosage.

and these very low doses modulate the immune system,

and they interact with the natural release of endorphins, our natural painkillers

in the body and interact on the, on the opiate receptors.

and that's where it has an implication for anaesthesia,

because if somebody is on this medication right up to surgery, the morphine type

drugs we give during the perioperative time may not work effectively.

So it potentially will worsen their analgesic experience,

and it simply needs a person to stop taking their low dose

naltrexone two days before they're going to need any acute pain relief

using fentanyl, morphine or all the other usual opiate painkillers.

Some of the other conditions

that do occur more commonly in these patients

in the general population, which may also have some impact in

anaesthesia, is one of these is we do see more hypermobility.

I don't know if you if that's something you come across, Charles, but

Ehlers-Danlos syndrome and hypermobility is has been seen more commonly.

And at the more severe end, these patients may have greater

risk of joint dislocation

subluxation when we move them around after they’re under general anaesthesia.

And we need to have awareness if we're going to do certain positionings

during surgery.

There's certainly some research evidence, particularly from a,

well, a long standing position in the States.

Peter Rover is very interested in this, subject.

on an overlap with hypermobility syndromes, in particular EDS.

So, it's it's something we come across fairly, fairly commonly.

Yes. And as an

advocate, it's something I hear people regularly saying that they are hypermobile

even though they've got very severe ME.

And that's why it would be very important for the patient to sort of inform us

which particular joints

they, they are more hypermobile in, and we can take extra care

during the anaesthesia to safeguard them against any, any sort of accidental injury

to those joints.

just, because of

just this, the other drug that people quite often obtain online

and that GP's are probably not aware of, is melatonin.

am I right in thinking that doesn't have any particular implications

for anaesthesia?

no. That shouldn't have any any effect on anaesthesia itself.

in fact, there's actually been a very recent large

and randomized, controlled, trial, multicenter study to see whether

melatonin preoperatively was better at reducing anxiety in children

than

benzodiazepines and that studies just recently concluded.

so it's been used intentionally

in that context as a pre medication in children.

and we certainly on my intensive care unit, it's one our first line,

thing to prescribe as a prescription medication

version of melatonin on ICU patients to help sleep

over night.

And certainly is

it's

a natural, sleep sedative and far better than any,

any of the pharmacological options for helping people sleep.

So I'd far rather they use melatonin than anything else.

Anton

can I pose a question which which is quite commonly raised, with us

and which we don't have an answer to.

And I know probably there isn't a set answer to this,

but it is a common question.

And and that is, is there any particular anesthetic regime

which is going to be more suitable for people with a condition where

they've got muscle weakness, problems with neurotransmitter medication?

is that.

So the,

the answer is it depends.

And it would have to be completely individualized.

So really when for all patients if there is an option

to do the surgery using a regional anesthetic technique only.

In other words, upon numbing the body region involved,

that that would be the the better way to go.

And completely avoiding the general anesthetic drugs altogether.

And that would just eliminate any of those risks.

as we know, in this,

if the patient is already had previous anesthetics

and they clearly had an adverse reaction to particular medications,

it would just be common sense to avoid those next time round

if they’re completely general anesthetic naive

then the anaesthetist would be best placed to use what they usually use.

obviously eliminating drugs

that would interact with things we already mentioned.

You know, for instance, those treatments might be on for Pots,

taking into consideration the impact of those drugs

and how they might interact with with various anesthetic drugs.

but in the end, it would really need to be individualized.

And it really depends on the type of surgery

and what anaesthesia is required for that surgery.

and tailor it accordingly.

The particular items

you mentioned earlier around, drugs that affect neurotransmitters.

I mean, that's quite broad in a sense, because all the drugs that we would call

induction agents, in other words, the ones that induce sleep and unconsciousness,

they're all interact with neurotransmitters, in a sense.

They they're working on Gaba transmission in the brain and,

and various other receptors.

So indirectly, all of them would fall into that category.

And ultimately they need a general anesthetic.

We would need to use one of them.

We've got to get them off to sleep to do it.

unless there is an option, as I said, to do the entire operation

under a spinal block or some other form of regional block.

Now that that is the default in

the NHS for people having, for example, hip and knee replacements.

That's what that's the way that we'd have it done anyway.

And then there'd be no need for any of those medications.

the, the avoidance of adrenaline.

that would only really

come into where, where they, where we would usually use

certain local anesthetic to have adrenaline mixed into them.

And that's where you referring to dentals,

where the local anesthetic that the dentists use usually is mixed

with adrenaline

It both reduces the toxic dose of a local anesthetic,

but also it causes less bleeding locally, where they inject it.

There are a few scenarios where we also use that combination

in the operating theaters, but of course that that can be avoided

if if we know the patient has a problem,

it all of these interactions though

aren’t true allergies because of course we can't be allergic to adrenaline.

We release adrenaline all the time.

It's a natural substance.

We'd be dead if we are allergic to it.

So none of these are true anaphylaxis or true allergic reactions.

But what I, what I personally suspect is going on

is that these patients are experiencing something that's more recently been,

discussed in the literature and something called mast cell activation,

where a very it's a very early component of their immune system

is, is mast cells which identify threats, etc..

And these mast cells can release up to 400 different mediators

and many of them are vasoactive mediators.

And I suspect many of these negative reactions to various medications,

because those particular substances

have triggered their mast cells to release different chemicals.

and that's the same, probably the same mode for whereby

these patients get negative reactions to certain chemicals, perfumes

and any number of other things, food intolerances, etc..

And there's a lot of growing literature

on this whole concept of mast cell activation, including it being shown

to be highly prevalent in patients who who generate long Covid

or get, other types of Covid symptoms.

And I don't know whether that that may be something you've

encountered in the literature, Charles, or on mast cell activation.

Yes. again, it's it's another one of these conditions

which seems to have a significant overlap, with, ME/CFS.

Yeah.

And, and can certainly these mediators can induce

a lot of these changes like changes in heart rate, blood pressure, etc..

that there are just so many different mechanisms involved in all of this

happening variably from one patient to another and, and simultaneously.

But we often find that actually mast cell

activation disorder is very rarely diagnosed,

even when it's quite obvious that the patient has got, say, hives or

gastrointestinal problems.

But actually it's not diagnosed and it's not treated unfortunately.

It is lacking profile.

Absolutely. Helen.

And I think it's, it's still thought of as a rare condition of course.

One of the original conditions which doctors are taught

about is systemic mastocytosis, which is very, very different.

And it's actually,

a malignant malignancy of these mast cells,

whereas mast cell activation syndrome is very, very different.

It's, it's nothing to do with the cancer.

It's got to do with instability of these mast cells.

And the the newest literature

suggests it's as common as 14 to 17% of the population.

Most of those obviously experiencing it very mild symptoms.

But you're right, it's it's actually a very common,

condition.

And really the symptoms are multi-system.

They're not just the sort of classic allergic symptoms.

So, I suspect it's behind a lot

of the negative reactions to medications in these people.

But unfortunately, like with ME/CFS, it's very much

dismissed by healthcare professionals.

Absolutely.

there is just a very slow

and long and knowledge translation gap between what we generate in,

in the literature and in research into it becoming,

a common, common knowledge within the system.

But hopefully this podcast is going to go some way to trigger people

to do a bit of research and self-education around these different topics.

We were discussing the role of melatonin.

Now obviously that's consultant prescribed normally, but what we sometimes

find is that patients go into hospital they’re on melatonin and their consultant

overseeing their care in hospital thinks, oh, this patient looks really sleepy.

So they take them off the melatonin.

And that, of course has a massive knock on effect to them they're then

not sleeping at all in an environment that's not suitable for them.

so I would urge, you know, caution around altering medication

regimes whilst you've got patients in hospital.

And that's that's a great point, Helen.

And, you know, my, my outlook on this is as an anaesthetist is,

you know, you you try and keep a patient who's coming from surgery.

You try and maintain everything that they normally get unless it's

going to directly, negatively interact with the acute

treatment in hospital.

And then you add whatever they need for the surgery on top of that.

And that that particularly comes around to another item

which we commonly encounter with ME patients is a large proportion of them

will experience fibromyalgia, sort of generalized body pain

and particularly muscle pain and, and soft tissue pain.

And certainly my daughter experienced that throughout.

in fact, she was that sensitive that just going on a car journey,

the vibrations of the car on the road would give her a lot of pain,

and she needed to really sleep on a nice mattress

that helped reduce ME, etc., etc..

So as a knock on effect to that, some of these patients will be on

chronic pain medication to help deal with their fibromyalgia pain.

which may include chronic opiates, gabapentin, amitriptyline,

all the other standard chronic pain medication used by chronic pain clinics.

and that we'd need to be aware of because we need to factor that

into planning the optimal, acute pain package

for them whilst in hospital and certainly in my own pre-op clinics.

What I'd ideally do when I encounter any patient who's a chronic pain patient

is include our acute pain team in in my,

pre-op report in terms of the plan for that patient's journey.

so they already have awareness of them ahead of time, know

when they're coming in for the surgery

and what we really want to do in line with talking about melatonin is similarly,

we want to make sure that they maintain all their chronic

pain medication,

ideally use regional techniques as part of their pain relief,

interim perioperatively,

because we know that these patients who are already used to chronic opiates

using morphine and other drugs, using that as the only form of pain

relief postoperatively is quite difficult.

They can end up needing much, much higher doses than other people.

If they're really tolerant of morphine type drugs.

so we'd ideally come up with a pain plan that that accounts for that.

and that's, that's, that is also

one of the, the points raised in our patient resource.

And, and points towards that.

And all of this

really comes under the whole umbrella that we want this entire interaction

at the pre-op assessment clinic to be what we call shared decision making.

And that's a more modern concept within anaesthesia.

And it's got information about this in the Royal College website.

And it's a reference and link from the patient resource.

and it's really it's about a team approach.

It's about the clinicians together with the patient and the surgeon

coming up with the best decisions for that patient in the first instance,

whether it's a good idea to actually go ahead for surgery,

weighing up their individual, cost benefit analysis.

and that's taking into account,

how important is the surgery in terms

of what quality improvements could offer against that individual?

ME patients may be risk of the ME getting worse, which is unpredictable.

But nevertheless if the surgeries may be a minor problem.

It might not be worth the risk.

Clearly, if it's a cancer surgery, it's a completely different risk

benefit analysis.

So that whole concept of shared decision making is crucial.

Any any

comments from Helen or Charles along that.

I think there's lots of simple things that anesthetic anaesthetists

and surgical MDTs can do to make a really big difference to the experience

people with ME/CFS have, and the NICE guideline does provide

guidance around hospital admissions and I think perioperatively

you need to consider whether you need to see that person, that patient in person,

a telephone call or an online discussion is probably much less tiring for them.

And if they find communication difficult, providing

they're happy, speak to someone who knows them well.

So a family member, partner, friend, home care worker or an advocate just to gather

that information, ask whether they have a care and support plan in place.

Unfortunately, a lot of ME/CFS patients don't.

But as you said, Anton, use that shared decision making to enable you

to put personalized plan in place and that will then allow you

to make the reasonable adjustments you need when they come into hospital.

I mean, if if it's essential for the person

with ME/CFS to come into outpatients, ensure

that you've got a quiet space with low lighting where they can rest.

Bear in mind if the person’s ME/CFS is at the more severe end of the scale,

they're going to be coming in in a wheelchair.

And for those with severe ME/CFS, they're going to be arriving on a stretcher.

So you're going to need somewhere quiet to put that, and you're going to be

they're going to have to be able to access toileting facilities.

And if you need to do a number of tests, perioperatively,

try and do them in one visit or the minimum number of visits,

because some of those people who are very severely affected are just too ill

to leave their homes.

So a trip to the hospital is a huge demand on their energy.

NICE has a phrase which I find is very useful to bear in mind

when you're dealing with people with severe ME/CFS and

that is risk assess

each interaction with a person with severe or very severe ME/CFS in advance

to ensure its benefits will outweigh the risk.

So for example, worsening the symptoms to the person.

For example, for people with very severe ME/CFS,

think about discussing things

with the person's family or carers on their behalf if appropriate,

whilst keeping the focus of the engagement on the person with ME/CFS,

I think that's a really important part of the NICE guidance.

you should be really thinking

about that as the anaesthetist or the surgical MDT involved.

Looking after this person.

That's that's fantastic points Helen, and fortunately

targets of modern

pre-op assessment clinics are to provide

where possible a lot of our assessments remotely now.

And certainly that is one of the few positives out of Covid.

It is that it actually hastened that movement to remote,

pre-op consultations.

And routine practice when we do see patients in a consultant

anaesthetist led, higher risk pre-op assessment clinic in person,

we we would always, encourage them to bring along,

either their, their partner or friend or whatever.

So we usually have a second person in the room.

And I think again, that's really important. Yeah.

That we've got a second person who can listen

when there's brain fog and difficult to retain information.

Somebody else has also taken on, on board,

to, to help explain it later on and repeat back that information.

And Charles, I think you had some comments.

Just just one quick comment.

Helen’s just emphasized the importance that we put

into the NICE guideline on on caring for people who are coming into hospital.

And there is as Helen indicates a separate section of the NICE guide on that.

just one particular point, which I'll pick off as well from what

we put in said, being very cautious

about the, about the pressure of touch.

and that's particularly important to people who are bedbound severe

end of the spectrum.

just quick points on on pain in that ME/CFS.

I didn't include my in my list of,

diagnostic symptoms because it was not one that we,

classified in the NICE guideline as a diagnostic

feature.

But pain is a very important symptom in this illness.

But it's interesting in that not everyone with ME/CFS has pain,

probably about 25% of people have no pain at all.

It's very minimal.

I personally have never had any pain as part of ME/CFS,

but at the other end of the spectrum, pain can be the most,

intrusive and disabling part of this illness.

And it's worth noting that people with pain

and then ME/CFS may be on different steps of the analgesic ladder,

so they may well be starting off with low dose amitriptyline, a low dose

tricyclic, and then moving on to gabapentin, pregabalin.

And there will be a few people, who have really got very severe problems

with pain who are on an opiate pain reliever.

So that's worth taking note of.

And we did, in the NICE guideline link the management of pain in ME

to the NICE guideline, on neuropathic pain.

Perfect.

And I think we've

we've given quite a good discussion there around most of the sort

of pre-op components that have actually been covered really

well in the patient resource document that's being launched.

perhaps a few of the the items that we cover in the document

around the day of surgery itself, and some of those we've alluded to there

in, in the, the, the list of common

symptoms for these patients, many of them voiced about their sensitivity

to noise and light, and their concerns around the theater environment itself.

And this is important, again, for the patients to inform us

about during that pre-op assessment, because we can

we can from from the pre-operative clinic,

we can advise the anaesthetist who's going to be involved

in the day of surgery, the surgeon, etc., that these are

particular issues for this patient and

and the way

operating lists work nowadays in the NHS is that at the start,

very start of the operating list, there's always a team brief

where the whole operating list is discussed with the entire operating team,

and this will be anything up to 8 or 10 people.

It'll be the surgeon, their assistant, the consultant anaesthetist,

anesthetic nurses, etcetera, etcetera.

And the list is essentially planned for the day.

And with each patient they'll go through what that patient's issues are,

what what's required for the operation, what the anesthetic plan is

and then particular problems, allergies, etc..

And this is a perfect moment to raise things to say.

This particular patient has ME.

Helen, did you have any further comments to add to,

what I was discussing around,

changes that could be made for the patient on the day of surgery?

to minimize the impact of their ME.

When it comes to the day of surgery itself, find the patients

somewhere they can lie down where it's quiet and dark.

So minimize the stimuli,

allow them to bring someone with them and let that person stay with them.

And if they normally have care, allow that caregiver to continue

to provide the care both before and after the surgery,

because that minimizes the energy expenditure.

because the care can be provided through familiarity

and the caregiver can respond to that person's cues,

and they can also advocate for that person.

In recovery find that quiet corner with the low lighting for these patients,

and keep external stimuli to the absolute minimum.

And remember that many people with ME/CFS, suffer from chemical sensitivities.

So avoid wearing scented beauty products or smelling of cigarette smoke.

when you're back

on the ward after recovery, provide a side room

where possible away from the noise and the bustle of the ward.

Keep it dark and use minimal lighting.

For example, looking at the patient and examining the patient.

I mean, I know of instances

where bloods have been taken just using the light from a mobile phone

and listen to what that patient needs and make those

reasonable adjustments.

Helen and Charles, any any final thoughts that, that you'd like to share

with the audience around ME and its implications

with anaesthesia?

Okay, so my key take home

message would be really listen to that patient.

Listen to what they tell you.

Make those reasonable adjustments and also believe that patient

and make them realize that you believe those symptoms that they're telling you.

And that way you will gain their trust.

They'll probably provide information like the NICE guidance.

So take that away, look at it and use it to make

those reasonable adjustments that they really do need.

And it will make their journey so much easier.

Yes, I'd really just like to second what Helen has already said.

And I think, you know, it's a big ask because we're,

you know, all doctors have got vast amounts of things to do not to look at.

But I would urge any anaesthetist who is looking after a patient with ME

to at least have a look at the key points in the NICE guideline.

It's very easy to, to, look at and pick up

what what's going on with these patients.

So in closing, I'd just like to thank all of our guests,

Doctor Charles Shepherd and Helen Baxter.

thank you for your time, both of you.

And for this really interesting discussion we've had around,

ME/CSF and its implications for anaesthesia

and in particular, really to to act as a launch

and create awareness of our patient resource

around CSF and anaesthesia,

which is being launched, the day after this recording.

if you haven't already, please make sure to subscribe to

Anaesthesia on Air, available via all the major podcast channels.

And have a look at all the links that will be provided with this podcast.

Both links to the patient resource, NICE guidance,

and all other relevant links in related to this topic.

And finally, thank you for listening.

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