Long Covid & ME/CFS: UCB Radio Interview with Dr Shepherd

March 22, 2021

Listen to the full interview streamed from Google Drive

Dr Shepherd talks about Long COVID and ME/CFS and possible NHS treatments

MEA NHS Specialist Services Information

See our list of NHS services for ME/CFS

MEA COVID Factsheets

The MEA have a comprehensive set of documents on different aspects of how COVID impacts ME/CFS which is continuously updated as more is known

The full transcript is shown below

00:00:00 Vicky Gibbens  

Here on UCB1. It is talking point and there's more people continue to recover from coronavirus. Many is still reporting this idea of Long Covid, ongoing symptoms that they just can't quite shake off for many weeks. However, at the same time, we've got some charities very concerned, as you know, the NHS seeks to workout treatment plans for those living with Long Covid. 

00:00:27 Vicky Gibbens 

The specialised treatments for ME sufferers may be combined with Long Covid patients as well. I'm doing this morning by doctor Charles Shepherd who is an honorary medical adviser at the ME Association. 
Good morning Doctor Shepherd. 

00:00:43 Dr. Shepherd 

Good morning, Vicky 

00:00:44 Vicky Gibbens 

Let's start off by just parking Long Covid over to one side for a moment and fully understanding what ME is, because often there seems to be confusion that other types of virus you can be left with symptoms from a virus and then individuals go on to be diagnosed from ME. Is that quite often what happens in reality? 

00:01:06 Dr. Shepherd 

Erm yeah, I think there's three sorts of components to this. There's the fact and you’ve been in this situation; you had a viral infection. It may just be flu or just a cold or whatever, and it and it's taking you a week or so to get over those symptoms. So Post Viral Fatigue, post viral debility after any viral infection is quite common.  

00:01:31 Dr Shepherd 

The second stage to this is that we have a group of people who get what probably best described as a Post Viral Fatigue Syndrome where this debility and fatigue goes on for several weeks. It may go on for a month or two. They may have other symptoms in addition to just the debility, the fatigue that follows a viral infection, and, as I say, we call that Post Viral Fatigue Syndrome and normally that dissipates over the course of time, providing people take it easy, right at the start of this viral, post viral illness. 
00:01:57 Dr Shepherd 

 And then there's this third component, which is what we call me Chronic Fatigue Syndrome, where people are remaining unwell three months or so after their acute infection, and they are sufficiently unwell with a group of symptoms affecting their muscles, their brains, their immune system, which is where this name Myalgic Encephalomyelitis comes from, which makes him so unwell that they're just unable to resume their normal activities.  

Whether it's work, going to school, education, or just normal family life, so there's a lot of people with Post Viral Fatigue, there's a lot of people, quite a few people with post viral fatigue syndrome, and then there's a much smaller number with ME, and where we getting this overlap with long covid is that we're saying that there's quite a lot of similarity here between people who got ME/CFS and people who've developed what is called Long Covid and after their covid infection and what we understand by long covid in at the moment is there's probably roundabout 10% of people who've had a diagnosis of covid.  
These are predominantly people in the same sort of age group and everything else that you get with ME, so they are, predominantly female, they're often in their twenties, thirties, forties, fifties, there previously fit. They're not like the hospital people with covid that have been severely ill, who are much older, do tend to be male and they are just not recovering from their covid, and in the case of covid they have got what are several groups and clusters of symptoms, they have covid related symptoms so these are symptoms which are very much related to the coving virus so they have heart problems, palpitations, cardiac arrhythmias, erratic, sort of pulse rate. 

00:04:00 Dr. Shepherd 
They have respiratory problems, shortness of breath, they may have lots of taste or smell, ongoing fevers. All these things that they had with the covid, but then many of them on top of that have this other layer of MEPost Viral Fatigue Syndrome, type symptoms, so they have this awful brain fog cognitive dysfunction that people with ME have and this very debilitating fatigue, which is often activity induced. They have various brain symptoms in in addition to the cognitive problems they may have problems with balance, they may have pain, headaches, they have unrefreshing sleep, so it's a complex picture with the long covid, but I think the point that we're stressing within the ME /CFS charity sector, is that there's actually a lot of things that people with Long Covid can learn from people with ME/CFS. And we can give that group a lot of help with the management of the ME CFS type symptoms within their long covid. And it's a two-way process because there's so much research and interest and money going into looking at possible treatments for long covid that this can work the other way, and that people will ME/CFS can actually gain help from what's going on with the Long Covid patients. 

00:05:17 Vicky Gibbens 

Help us understand why the two, though when it comes to accessing, you know specialised treatment through the NHS, why do they need to remain separate when as you've described, there seems to be so much overlap between the two? 

00:05:30 Dr. Shepherd 

Well, there's the overlap, I think at the moment because the people with long covid have the, as it were the covid layer of symptoms in addition to their ME/CFS type symptoms. I have, as I say, ongoing problems, probably with respiratory function heart function. They need an assessment in a specialised referral centre which involves people, cardiac physicians, heart physicians, respiratory physicians, who are going to properly assess these symptoms related to the covid virus and advise on appropriate forms of management. Now that sort of expertise is not available in the current setup for hospital-based referrals for people with ME/CFS. 

00:06:17 Dr. Shepherd 

On the other hand, erm… our sort of feedback from people who are going to long covid clinics is that they're not really quite so good or in tune, or giving you know there to give good management advice when it comes to the ME/CFS like symptoms. So, I think these two services need to be linked up, they need to be talking to each other, but at the moment because there are so many people newly diagnosed with long covid needing the specialised help that they do, particularly from the coving symptoms that it is better to have two separate services. 

00:06:54 Dr. Shepherd 

But working, I think together where the clinics are in the same situation and this is this is happening, for instance, down in Cornwall. I understand I did a programme on this for the BBC on this, not very long ago, but I think actually combining the two into one service is not the way to go at the moment. It may be as time goes on and that this might be a helpful solution, but not at the moment. 

00:07:13 Vicky Gibbens 

What about the landscape in terms of services that ME sufferers can access across the UK? Because there seems to be discrepancies even for that. 

00:07:23 Dr. Shepherd  
Yes, this is a major problem at the moment we set up these specialist hospital-based services where doctors can refer patients with a query diagnosis to get a firm diagnosis or for help with management and a specialist level, that they were set up after the what was called the Chief Medical Officers report into this illness which is going back almost 20 years. 
00:07:46 Dr Shepherd 

But they haven't really expanded, and in fact to some degree they've contracted. So, whilst some people in some parts of England have access to these services, other people don't. When it comes to the rest of the UK particularly well, all the different devolved regions of the UK and Scotland, Wales, Northern Ireland, and these services are either very, very rare or are just non-existent, and that is a major concern to us at the moment, but that people in certain parts of the UK just don't have access, to these specialist services. 
00:08:17 Dr. Shepherd 

If people do want to find out about these services, we do on the ME Association website have a contact list, a directory of all the ME/CFS services throughout the UK and the contact details of how to get in touch and how to get GP can refer someone to one of these services, is there. These services are there for both adults and children and adolescents, because a lot of people don't actually realise that children and adolescents, as with Long Covid can get this condition. 

00:08:50 Vicky Gibbens 

Doctor Shepherd, what if, what if you're unsure, it's hard. It's been a confusing time as it is, you end up with you know, ongoing symptoms and you don't feel perhaps you're getting the right treatment path. You perhaps don't have the knowledge to know whether you've got just a post viral fatigue syndrome, or whether this is, you know, more serious from the acute infection. What should you do? 

00:09:15 Dr. Shepherd 

Well, I think first of all you can get a lot of help from the charity sector. I mean, we've got an information leaflet, it's free to download on our website on early diagnosis of any CFS. We've also got a very comprehensive leaflet on Long Covid, so you can get some help from the charity sector. 
But, most of all you need to go back to your GP discuss what's going on, if your GP is not feeling confident about making a diagnosis, then with the Long Covid there are now 70 plus Long Covid referral clinics, you can ask him referred to a Long Covid Clinic, if this is clearly following covid. 
If it's an illness which is not following covid but it's a post viral fatigue illness that's not going away for some other reason, and you can ask your GP to refer you to one of the ME/CFS services throughout, certainly for England, as they say there are major problems for people in Scotland, Northern Ireland and Wales in this regard. 

00:10:12 Vicky Gibbens 

From the science do we understand who is more likely or other risk factors when it comes to developing ME

00:10:20 Dr. Shepherd 

We, again, this is where there's an interesting overlap with Long Covid, it is very much an illness that starts with an infection, and it's an illness that we see in normally in previously fit young adults, they're often in their twenties, thirties, forties when this illness starts. They don't seem to get over it and what we think is happening is that the body's immune system, again, it's very similar overlap with Long Covid, the body's immune system kicks in, produces an immune response to this infection, but then the immune system response doesn't switch off.  
What we think is happening in ME and possibly in Long Covid is that this non switching off of the immune system is such that it remains in a sort of overactive, overdrive status, as though it still trying to fight off the infection and that's why people have these ongoing flu-like feelings, sore throats, glands and everything else that goes with having a dose of flu. The immune system just hasn't switched off and that is possibly the fundamental problem in both of these conditions. 

00:11:28 Vicky Gibbens 

The ME Association is there to help anyone who of course is suffering with ME or Chronic fatigue Syndrome which can impact any of us, any age, any ethnicity at any time in life. So, it is important that we are aware and perhaps we have shared lots of medical terms this morning, but as doctor Sheppard has said, there's plenty more advice and leaflets and support online at meassociation.org.uk Doctor Charles Shepherd, thank you for joining us here on UCB. 

00:11:58 Dr Shepherd 

Thank you, Vicky. Happy to come back again. 


Talking points with Vicky Gibbens on UCB1. 

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