Listen to the Interview
Dr Shepherd was interviewed on Radio Jersey and it was broadcast on 12th May 2021. Click the button below to listen to the full recording or read the transcription below
Also interviewed was Jersey woman Carol Guardian and you can listen to her below
00:00:00 Ashlea Tracey
Morning listening to breakfast in coming up as one Jersey woman calls for more support for people with chronic pain, will hear from a doctor that advises the ME Association.
00.00.38 Ashlea Tracey
BBC Radio Jersey – First, it’s 5 minutes past seven as the mornings get lighter, it can often be, well, a bit harder to motivate yourself to get out of bed and start your day, but for people with chronic pain, the reality is that they can end up staying in bed all day because of exhaustion. After 8:00 o’clock this morning you’re going to be hearing from Jersey woman Carol Guardian.
00:01:00 Ashlea Tracey
Now she’s in her 60s and she’s had the neurological condition known as ME for most of her life. She wants to see more support for people in the island who like her, find it difficult to do even the most simple daily tasks. Doctor Charles Shepherd is medical advisor to the ME Association and we can speak to him now.
Morning to you Doctor Shepherd. So, describe the condition for us and how it actually affects people, for those who don’t know so much about it.
00:01:28 Dr. Shepherd
Right, so ME stands for Myalgic Encephalomyelitis, a long complex medical name. But as the name suggests, it’s an illness that involves the muscle, the brain, and the body’s immune system and what normally happens it affects people normally in their 20s, 30s, 40s although it can affect children as well.
00:01:52 Dr. Shepherd
It’s an illness that follows a viral infection, so people get a viral illness and there’s a lot of overlap here with this condition called Long Covid it following an infection with Covid. And they just don’t recover and they have these physical problems which involves really physical exhaustion, activity induced fatigue. So, it’s rather like running on a flat battery.
00:02:18 Dr. Shepherd
As you just described, your day just starts where you just don’t have the energy to sustain normal activities throughout the day and this not only affects what you can do physically, but it also affects mental function.
00:02:28 Dr Shepherd
Again, like long covid people have problems with what they call brain fog, their short term memory, concentration, attention span goes as well and then on top of that they have a range of other symptoms involving brain muscle and infective immune system type symptoms. So, they just feel as though they got an ongoing dose of flu. They may have sensory disturbances, they have problems with balance, temperature regulation a long list of symptoms, and so it is a very disabling condition.
00:03:05 Ashlea Tracey
And how easy is it to diagnose, you know someone’s not feeling quite right and they go to the doctor? Does would a GP be able to pick it out straight away or do you have to do test? How is it diagnosed?
00:03:16 Dr. Shepherd
Right, well we one of the problems is we don’t have a blood test for ME, so there are problems with diagnosis and this is being addressed in what we call the NICE guideline here in the UK this is a guideline for doctors on diagnosis and management of this condition.
00:03:34 Dr Shepherd
So, the diagnosis is largely made on the patient’s clinical history, giving this history of being perfectly well, viral infection, not getting over it and then having all these brain muscles and immune system symptoms. Carrying out a proper physical examination and then doing which is very important a range of blood tests to make sure that there’s no other cause for these sorts of symptoms, because there’s a lot of other illnesses that can cause an ME CFS like illness. So, people need to have their thyroid function tests, liver function test, kidney function and a range of other tests.
00:04:10 Dr Shepherd
One of the problems that we are addressing, a member of the committee that’s preparing this new NICE guideline here in the UK is that people wait a long time to get a firm diagnosis. In many cases it’s well over a year, and there’s also a lot of misdiagnoses, so people are being misdiagnosed as having ME when they’ve actually got some other condition, which may even be treatable. So, it’s not always an easy diagnosis to make, and that’s why people need a specialist referral position based.
Multidisciplinary Service Hospital based service where GPS can refer people who need more help with either diagnosis and management of this condition. I know from coming over to the Channel Islands on several occasions over many years that this is not something which is available there.
00:05:02 Ashlea Tracey
And what difference would it make? You know we’re going to be speaking to Carol after 8:00 o’clock. She has ME. She doesn’t necessarily think it’s taken seriously by lots of people, what could be done here on Island to improve things for the likes of her.
Well, if people could get an early and accurate diagnosis, that will be a very important step forward. And then if they did have an early and accurate diagnosis you could start giving them really good advice on management, we don’t have a drug treatment for this illness at the moment. But there’s a lot that doctors can do, particularly in advising on what we call activity and energy management through a process called pacing, which means just carefully balancing what you do in relation to rest and activity.
00:05:47 Dr. Shepherd
There’s a lot doctors can do to help with symptoms. As you mentioned, pain is a very important component of this sleep disturbance. So, there are drugs which can help with the various symptoms and if patients have this management input which is providing good guidance on management, support and everything else that should go with it and hopefully we can improve the outlook prognosis for these people because many of these, in fact, the majority of people that ME and then becoming economically inactive.
The cost to the UK economy has been estimated at £3.5 billion per annum because these are fit young people who are no longer, you know, economically viable in a word that there are relying on benefits and that their costly with state a lot of money in in in medical care.
00:06:35 Ashlea Tracey
We can’t get up and go to work, yeah?
00.06.37 Dr Shepherd
So, if we could get these people managed properly at the very beginning. A lot of this long term You know ill health, might be reduced or even eliminated.
00:06:52 Ashlea Tracey
You talked about pacing there. Give us a sense of what that is, you know in terms of energy management. I’ve never heard of that phrase before, something I could probably do with learning a bit about to be honest.
00:07:01 Dr. Shepherd
This is something we are talking about again with this overlap with long Covid, so this I mean in the very early stages of this illness and people need a period of good old fashioned convalescence. It’s something that’s gone out of fashion in medical language, so they need rest at the very beginning of a post viral illness, when they’re really feeling grotty and ill, not going back to work when they’re not feeling right, and then gradually and flexibly increasing their physical and mental activity. But doing this in little chunks so you have a little bit of physical activity.
00:07:29 Dr. Shepherd
It may be just a short walk around the garden to start with and then a bit further you have a rest. a bit of relaxation. Then you do some mental activity, another rest, relaxation and you gradually build things up. But it’s got to be a flexible process because these people find that their condition varies very much from day to day, so one day they may, if you look in terms of a mobile phone battery, you start the day with your battery at 20% other days it may start at 50%.
00:08:08 Dr. Shepherd
So, you just hopefully build things up on a very gradual basis, but you need help to do this, and if there’s not help coming from doctors, physiotherapists, occupational therapists on how people approach pacing and they get it all wrong. So they, and I know this from personal experiences as well, you feel a bit better you go back to work, you crash again, and that’s not the way to approach an illness like this.
00:08:35 Ashlea Tracey
And you’ve mentioned long covid a couple of times and a lot of symptoms it seems overlap, almost so is that making it more difficult to diagnose and treat then this condition.
00:08:46 Dr. Shepherd
Well, for the people with long Covid, it’s rather more complex because they’ve got two layers. They’ve got a post viral fatigue ME/CFS type layer of symptoms. Many of people with long Covid have all these activity induced fatigue, cognitive dysfunction, problems with pulse and blood pressure, pain, and that go with ME. But on top of that the Long Covid people have got symptoms which are directly related to the Covid illness that set this off. So, they’ve got breathlessness and lung problems, some of them have chest pain and heart problems and Covid as an illness we know that it can affect the liver, the lungs, the skin, the gut.
00:09:26 Dr. Shepherd
So, they have another layer of symptoms on top of their me CFS like symptoms, but what’s interesting is that in some places, and it’s interesting that in the Isle of Man and I’m involved with it this week, and there’s a debate in Tinwald for Parliament there looking at providing a service for people with ME CFS, but also for the people with long Covid. Whether, as in some cases here in the UK you might even combine long Covid and ME CFS service because of this overlap with symptoms and both being severe debilitating post infectious conditions.
00:10:04 Ashlea Tracey
Really interesting stuff. Thank you for your time this morning, that was Doctor Charles Shepherd, he is the medical advisor to the ME Association. After eight, we’re going to be hearing from Carol Gaudion. She’s from Jersey and she’s had the illness for a long time. She wants people to be more understanding of what it is and how it affects her and many other people.