On March 30th 2021 Radio 5 ran a segment on Long COVID featuring stories from people with the condition, Professor Helen Stokes-Lampard and Dr Shepherd. The interview to highlighted similarities and differences between Long COVID and ME/CFS. The full transcript is shown below and you can listen to the broadcast from the link below.
Anna Foster, and Clive Myrie, BBC Radio 5 live.
00:00:14 Anna Foster
Hello is drive 6 minutes past six now we've been talking through the programme about the treatment of Long Covid and the estimated 100,000 people in the UK who is still experiencing symptoms three months after getting covid.
00:00:26 Clive Myrie
Yeah, symptoms include breathlessness, muscle aches, hearing and eyesight problems, headaches and brain fog, but the most debilitating factor for many is crippling fatigue.
00:00:36 Anna Foster
You heard earlier in the programme from Reece, who is in his 20s and caught coronavirus during the first wave of the pandemic last March, and he says he is now a shadow of his former self.
00:00:47 Reece Jacob
Getting dressed, going on a short walk of up to about 10 minutes I think is the most likely manage at the moment, playing some music or doing anything really that requires any cognitive effort. My baseline is 2 hours and 45 minutes within a day if I exceed that I'm liable to crash. 00:01:06 Reece Jacob
When I crash it's almost as if somebody's piled sandbags on top me and sometimes the breathlessness gets way out of control and it feels as though I'm going back into the acute phase of the virus again.
00:01:17 Anna Foster
Well, Reece is now being referred to a long covert clinic, but he was initially diagnosed with ME, which has many of the same symptoms. So, what lessons can be learned from treatments of ME and other chronic illnesses? And could the current attention on funding that's being given to Long Covid eventually, perhaps bring new understanding to overlooked conditions like IBS and Fibromyalgia. Well, doctor Charles Shepherd is a trustee and honorary medical adviser to the ME Association.
00:01:44 Dr Shepherd
Good afternoon Anna
00:01:46 Anna Foster
Well, when you look at Long Covid and ME, what do you see in in terms of similarities and differences?
00:01:53 Dr Shepherd
Well, they are both very debilitating post viral illnesses, as you say that they've got a lot in common, but there's some important differences between them. They are both conditions which follow on normally immediately after someone's had a viral infection, and as you've heard from the stories with Long Covid that people just are not getting better and the same applies with ME. Now the main overlapping symptoms that they've got is this very debilitating fatigue, it is often activity induced fatigue, so they do some exercise and then they just feel complete whacked out after they've done that.
00:02:26 Dr Shepherd
The typical sort of ME type symptoms that come into long covid are this brain fog the cognitive dysfunction which Reese has been describing, so its problems with short term memory, concentration, attention span. They have problems with regulating their pulse and blood pressure, so they found very difficult to stand up and maintain things doing that.
00:02:51 Dr Shepherd
They may have a condition called POTS (Postural Orthostatic Tachycardia Syndrome), where the pulse rate rather rises very quickly on standing up and they feel faint, there sleep is on refreshing they have muscle and joint pains. You know a wide range of post viral symptoms and then with the Long Covid people, there's this additional layer of symptoms which seem to be very much related to the original Covid infection. So as Reece described that there's this problem with lung function, breathlessness and this may well be related to ongoing damage to the lungs from the actual Covid, they may have heart symptoms, palpitations from damage to the heart muscle during the covid they have the loss of taste and smell, intermittent fevers, so it's different clusters of symptoms, some of which overlap with ME, some of which don't.
00:03:31 Dr Shepherd
But they are very similar conditions, and there posing similar problems for the medical profession I've been dealing with people with ME and for post viral fatigue syndromes for 40 years now, and these are badly understood by the medical profession. The medical profession doesn't understand what the cause is, so they don't have to treat it, and patients are very often just left to get on with this, you know, with their own devices.
00:04:02 Anna Foster
I was going to ask you, you possibly just answered my question there right at the end. Do we know much about why some people experience this post viral reaction and others don't?
00:04:15 Dr Shepherd
We've got some important clues. We know this illness, as we we've heard, starts with a viral infection and what we think happens is that people are not making a proper recovery from the immune response to viral infection. Anyone who gets a viral infection is going to feel grotty and tired, achy, and that's all due to immune system chemicals called cytokines and what we think in ME is that this immune system activation that occurs with a normal viral infection is not switching itself off, and Interestingly enough, in Covid we know that there's this thing called a cytokine storm which causes all this inflammation in the lungs, so cytokines seem to be involved in Covid. It may well be that there's a similar immune system mechanism going on here with long covid in which the immune system response isn't switching itself off like in ME and that's helping to maintain these covid symptoms and ME symptoms as well.
00:05:07 Dr Shepherd
It's interesting you probably heard about the anecdotal reports from people having a Covid vaccination, if they've got Long Covid saying they're getting better or even you know almost getting back to normal after that. It's been postulated that this vaccination against covid is actually resetting this defective immune system response that's going on but you know that that's one attractive theory which may explain both conditions and there's a lot of research now going on, fortunately into Long Covid and hopefully what we find out about the causes of long covid can then transmit across to people with ME.
00:05:52 Anna Foster
Well, that that it sounds like that would be a hope, wouldn't it? And something, I mean, it is sad to say you know something with a profile that that Long Covid it has at the moment could potentially help these other illnesses bringing in research funding and that kind of thing.
00:06:11 Dr Shepherd
Yes, I mean exactly, and I think the other thing is that this needs to be a two-way process because what people with ME can learn from the research that's going into long covid. In return, we built up a vast amount of experience of dealing with sleep disturbance, pain, activity management, energy management, all these different post viral syndrome symptoms that the people with long covid have got, and that the ME charity sector in particular has got a lot that it can offer to help patients with Long Covid.
00:06:45 Anna Foster
Is it the sort of thing that we can, I mean, maybe this is happening at the moment, but that we could realistically look for a cure for or the too many different strands to be able to perhaps find one catch all way of dealing with it?
00:07:01 Dr Shepherd
I don't think that because there's so many different clinical presentations going on here, I don't think there's going to be a magic drug treatment which is going to sort them all out, and I think what we're doing, which is what we're doing with ME at the moment with big genetic study going on. Funded by the MRC at the moment. We were looking at sub groups of people under the ME/CFS umbrella and I think the same applies to Long Covid, and I think what's probably going to happen is that we're going to find successful drug treatments for certain people with certain types of symptoms under this, this umbrella of different conditions that are going on. But I am optimistic that we are going to move beyond what we are at the moment, which is just treating symptoms into treating underlying disease process in these conditions.
00:07:48 Anna Foster
If anybody is listening now, who has experienced this now, I know we've had some text earlier in the programme from people who have. Is there any particular advice that you could give to them in terms of what they should be doing physically or places they can maybe be looking for help and advice?
00:08:06 Dr Shepherd
I think the most important thing for people, especially with Long Covid, is at the same applies to ME is to get there what we call their activity and energy management correct, because one is hearing so many stories of people with Long Covid, they're feeling a little bit better than going out for a run, because a lot of these people are extremely fit before they got Long Covid and then they're crashing immediately after that. So, the most important, I think initial advice for people with Long Covid and ME is to get this activity management correct and that right the very beginning goes back to something which is gone out of fashion in medicine and that's called convalescence which is just taking things easy, gradually trying to build up to what was your normal physical and mental activity.
So, you do a little bit of physical stuff, do some mental stuff and have a bit of rest and relaxation in between. It's a very flexible progress, this is an up and down illness so you do it flexibly, gradually and get that right. Get good advice on how you can treat the different symptoms, the pain management, the sleep disturbance. There are things which are coinciding with both illnesses there is one thing called mast cell activation
00:09:18 Dr Shepherd
syndrome, which seems to be present in not only ME, but people with Long Covid and it maybe talk to your doctor if you've got symptoms related to this particular component. There may be drugs like histamine antagonist, antihistamine diets, even which may be of help, so that there's quite a lot going on, which can be given to help these people. GPs some are extremely good; others are not so good and if your GP is not being able to provide the sort of the correct guidance and information on this then either get a referral to a Long Covid clinic.
00:09:50 Dr Shepherd
There is about 70 of these now throughout the UK or to one of the ME/CFS with hospital-based referral services, and in actual fact in some places Cornwall, Northern Ireland, that there is some linking together of the Long Covid the ME/CFS referral services because they can both offer, I think helping different ways, you know, interlinking directions.
00:10:21 Anna Foster
Thank you ever so much for joining us. Doctor Charles Shepherd, who's a trustee and honorary medical advisor to the ME Association.