Woman's Hour - Women and Long Covid

Episode Date: October 23, 2020

New research out this week suggests that 1 in 45 people who get COVID-19 will continue to be unwell after three months, even if their initial infection was mild. And, under the age of 50, it does seem that women are more likely to develop Long Covid than men. People with Long Covid report on-going symptoms including fatigue, headache, shortness of breath, problems concentrating - ‘brain fog’ - and heart palpitations, which leave them unable to work, look after their families or even get off the sofa. Support groups and campaigns to get recognition and treatment for this new and debilitating illness have sprung up – most of them led by women. Their efforts are now beginning to bear fruit, with among other things a network of Long Covid clinics recently announced for some parts of the UK. What more needs to be done? Jane is joined by a panel of experts and campaigners to hear from some of you about how Long Covid has changed your lives since March, and to discuss the latest developments. She speaks to - Dr Nisreen Alwan, Associate Professor in Public Health, University of Southampton;Ondine Sherwood LongCovidSOS campaign co-founder; Dr Elizabeth Kendrick, GP & Medical Director of Hertfordshire Community NHS Trust who have been running a virtual Long Covid clinic since August and listeners – Emily, Gillian, Niluka and Morag.Presented by Jane Garvey. Producers: Sarah Crawley and Louise Corley Editor: Beverley Purcell

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BBC Sounds. Music, radio, podcasts. Hi, this is Jane Garvey and welcome to the Woman's Hour podcast. It's Friday, it's October the 23rd, 2020. Hello, good morning to you. And in response to your emails on the subject today, we are focusing on long COVID. Now, we do know that statistically across the world, more men than women are dying as a result of COVID-19.

But what seems to be the case now is that more women than men are suffering the effects of COVID-19 for longer. This is so-called long COVID. Now, we're not suggesting for one minute that long COVID is restricted to women and that men never get it. That's not what we're saying, but we're exploring the fact, it does seem to be the fact, that more women than men are suffering for longer. And it's something we're going to devote the whole programme to this morning. Really welcome your thoughts on social media, at BBC Women's Hour, or you can email the programme via our website.

We have four listeners all over the British Isles. Emily is in Newcastle this morning. We'll talk to Naluka in London, to Gillian in Aberdaren, and to Morag, who is in Glasgow. But we're going to start with somebody who is a professor, an associate professor in public health at the University of Southampton,

Dr Nisreen Alwan. And Nisreen, you have had COVID-19. Tell us a little bit about your own experience and how you are now. Thank you, Jane. Yes, I started symptoms of COVID-19 in the second half of March and I really never fully recovered.

The symptoms kept coming and going over a few months. On the whole, I would say I am improving now. It is better, but I wouldn't say I've recovered to my pre-pandemic health, if you like, and activity levels. Tell us a little bit about the symptoms that you had. So I had kind of several symptoms at the start I had the fever and I had the cough I had the muscle aches and the and I had this feeling of chest heaviness as well and you know neck pain. So I had really kind of the sweet, and then also some GI symptoms as well from the very start. So I had the sweet of symptoms.

At the time, obviously... Sorry, I'm probably being thick, but what do you mean, diarrhoea? Yeah, diarrhoea and, you know, yeah, and abdominal pain. Right. And I think, do you know where you got it? It's difficult, obviously, but my teenage son got a short, very short term illness three days before I did. So my 13 year old son. So my guess is that I got it from him. Did you ever at any time test positive for COVID-19?

No, I didn't, because at the time when I got sick, only people who were admitted to hospital were tested. So there is no community testing for COVID-19. And all that obviously applies to all many other people who are in the same position. Now, I know you're back at work, you're working from home. But honestly, Nisreen, how are you? Thank you for asking, Jane. I am, as I said, I am generally feeling better. I've learned to I think I've learned to adapt my life and my activity so I can cope with it better. It's very hard, therefore, to ask about, you, who are living with it, because you you you you start knowing what triggers you feeling unwell or brings your symptoms or exhaustion and you start avoiding it and adapting your life and normal activity level accordingly.

And then obviously that makes you feel better because you are avoiding what has you've recognized triggers the symptoms. So it's not a straightforward question. Well, as I think we need to acknowledge early on in this programme, nothing about this is straightforward. And many of us have got to confront the reality, which is that in truth, the answer I don't know is often the only appropriate one at the moment. And we just need to cut everybody a bit of slack

and perhaps all stop bickering with each other about how to approach how we deal with COVID-19 and its impacts. But Nisreen, you are someone, I think, in good health before this started. What about the idea that long COVID is apparently more likely to impact women than men? Why might that be the case? First of all, do you believe it is the case? Yes, Jane, this is really interesting. I think, so we are seeing some very initial emerging evidence saying it might be more common in women. We have known for a while that the very helpful social support groups of long COVID have many more women than men in them um and there's been uh there's recent evidence from

the covid symptom app study that uh women are more common to have it you know have symptoms for more than four weeks um uh so i think that there are signs that this is the case but i think there's a lot of uncertainty because the studies that we have now as you mentioned are very uncertain very um early stage uh obviously issues with you know who who takes part in these studies in terms of who gets selected um in the studies the sample size um etc so i think it's it's difficult to give solid numbers at the moment but definitely the indication is there right well the figures that came out this week the research that came out from King's College this week, it was data taken from the COVID symptom app, wasn't it? Of course, we need to bear in mind that that probably isn't a representative sample. So the data will have been extrapolated across the general population, won't it, Nisreen?

Yes, that's right. So obviously, these are people who are logging their symptoms on an app on a regular basis. And also the sample that was used in that particular study with people who also tested positive. So had a test and perhaps that also might be a bit selective in terms of who were allowed or qualified to have a test, particularly at the early stages of the pandemic. OK, thank you for that. Let's bring in Ondine, who is Ondine Sherwood, who's one of the co-founders of the Long COVID SOS campaign. Ondine, you've been unwell.

I know that you're struggling with sleep at the moment, aren't you? You can't get to sleep. Yes. Good morning, Jane. Yes, that seems to be a persisting symptom, which I didn't even I didn't really have at first. I my first symptoms were quite nonstandard in that I many had fatigue, chills and some gastrointestinal system symptoms. But I didn't have the standard cough and fever. So I didn't really know whether I had COVID-19. And you haven't been tested either. No of course I wasn't tested and after five days I thought I was better as well and I thought well that's that but then in fact I got ill again and gave it to my son who had some more obvious

COVID symptoms so I'm pretty sure I had it and the relapsing and remitting nature of my illness trajectory is like nothing I've ever experienced. I've been convinced I was better for periods of up to a week or longer, and then it all came back. I am feeling better. My exercise intolerance is much less. I'm not getting the very heavy fatigue, but yes, the sleep is absolutely hellish. And that really does impact on how I can function during the day. Right. And you were a fit woman before this happened? Yes, I was very fit. I was cycling a lot, running. I consider myself fitter than I'd been most of my life, actually.

And what has certainly come out from survey data and certainly from talking to people on support groups. It's astonishing how many people were particularly fit before they got struck with Covid and ended up with long term effects. Nisreen, what do you think about that? It's actually fitter people who might suffer for longer. Any truth to that? Again, sorry, Jane, we don't really know what's going on but i would say that initially uh it was probably much easier to observe a massive change in um in fitness and activity level if you are you know very fit before before falling ill compared to so if you've got a chronic illness and your activity is limited in some way and then you get covid on top um it might be a little bit harder um to to to find that big difference but um but we really don't know and and again, with the support group, is it people who are very fit who have experienced a massive reduction

in their activity that are more likely to join the support group? I think that's a very good point. Okay, let's talk to the listeners. And in fact, we're going to start with somebody who is super fit, 45-year-old Emily. Sorry to introduce you that way, Emily, with your age. But anyway, good morning, welcome to the programme let's just first of all hear a bit about your life before you got ill

tell us about yourself Emily OK, good morning everybody as you said I'm 45 years old I just ran my first 5k back in March at the beginning of March with my running club I also do a weekly yoga class back in March, beginning of March, with my running club. I also do a weekly yoga class. I go rock climbing.

I've just started doing some wild swimming. I'm the mum of two girls who are also very active and they're also rock climbers too. So, yeah, we have a pretty active family life. And you're not used to being ill, are you? It's just not you? No, I'm not used to being ill are you it's just not you no I'm not used to being ill at all um I'm generally very healthy um so yeah being ill is is not uh it's not a thing for me can you talk us through what happened and and when it happened sure yeah so I first became ill um around

about the beginning of May um and it started with a really really bad migraine and it's I kind of got a bit of loss of taste and loss of smell then developed a bit of a fever and after about three or four days I thought yeah okay this is not good called the GP and they said no it could be you know it might be COVID but you're not a key worker so we can't test you um so you know just uh just rest and get on with it basically which is what i was doing and and still you know three four five weeks later i'm still ill i'm getting worse the the fatigue is absolutely crushing i was unable to get out of bed for several days um and uh i was i had to really get back in touch with the GP and say, look, this isn't normal, I need some help.

So they sent me for a test and of course that's five weeks after I first reported and that test came back negative. But at that point a GP who knows me saw that this had happened and got in touch and she's been brilliant ever since. She's been keeping an eye on me and has been fighting my corner and trying to get me more help, sending me for chest X-rays, etc. and trying to get me some help through a post-COVID clinic that's being run in Newcastle.

What has it done to your mental health and to your confidence? It's really knocked my confidence, actually. Really knocked it. I've been unable to work for the last six months um i work part-time um and so just you know having the fatigue and having all that time on your hands as well and you just don't have any energy to do anything um and when you're somebody who's active and is used to be doing used to doing things all the time talking to people all the time it it can be really quite uh it can take give you quite a knock to your confidence.

Oh, I don't doubt that for a second. You at least have had the experience of, a positive experience of a GP who took care of you and believed in you. I think if we bring in Niluka now, who's another listener in London. Niluka, I don't think you had such a positive experience of your GP, did you? Morning, Jane. No. Yeah, that's right. So my symptoms are very similar to Emily's actually, but my experience was very different initially when I spoke to the GP. So it could be because I started speaking to the GP earlier than Emily did. So perhaps they weren't as well aware.

But the first time, the first two times I spoke to the GP, they really pretty much shrugged and said, look, we don't know what this is, but it sounds like anxiety. I think that you're making your symptoms worse. It was suggested to me that I'm looking at my heart rate too often. And these sort of apps that we have these days can actually be worsening our symptoms so I thought oh gosh this isn't great um it wasn't really very validating feeling so really I kind of went back to square one and and waited um to be sick enough to to go privately unfortunately wow you waited to be sick enough to go privately that's grim um that feeling of not being believed that that Naluka that that doesn't do a lot for you does it and I'm afraid this is going to sound very woman's hour

but this is a bit of a trope over the years with women perhaps being dismissed and thought of as heaven forbid hysterical what do you think of that? I think that's absolutely shocking and I know from the support group I'm part of I'm hearing so many women saying that they're being dismissed as menopausal hormonal women um I think I'm probably slightly too young for that to have been um suggested to me and had it were I'd have been

pretty pretty disheartened yeah yes you're 38 um I should say yeah carry on um I'd say that persistence has helped though so I think I've waited and I've regularly called back into the doctor's surgery to let them know that I'm still here, that I'm still breathless. I'm still fatigued on and off. And I think that persistence has helped. And just the vast numbers of women that are also coming forward and sharing the symptoms lingering has helped sort of highlight the issue to the GPs. I think it's really important that you and Emily and our other contributors that we're about to hear from are able to come on today. But you are, it's been difficult for you, I know.

But there'll be other people listening who just simply are too tired this morning or too ill to speak about this. So thank you for doing it. We'll come back to you both. Ondine Sherwood, you were nodding along there when I talked about perhaps some GPs being dismissive of women. Is this something members of your group have encountered?

Well, yes, we actually ran a survey of people's experiences with their GPs. We did that prior to our meetings with the NHS so that they could see what was actually happening on the ground. And there was a significant proportion of people who'd been dismissed, who'd been told it was anxiety, who'd been told that they probably hadn't even had COVID-19. Interestingly, there were men as well in that group who were told, had similar things told to them, which is encouraging in some ways that women aren't just being singled out as the anxious people. But yes, by the way, as I said at the beginning, we are not suggesting that men don't get long COVID. No, they get it and they're also told they're anxious. So they also struggle with GPs. It was certainly much worse in the early days.

We had a number of people saying that they had a mixed response, that the GPs were dismissive, shrugged, they had no clue earlier on. But as time went on, when it was more in the news and it became established that this could actually be something that they were trying to help but many of them tried to help but didn't really know where to turn so they were sympathetic but couldn't do very much for their patients. All right it's worth just mentioning this email from a listener I had Covid back in March and I've had ongoing and different symptoms in the months afterwards my GPs have consistently put it down to anxiety,

which irritates me as it meant that I had the wrong advice from the outset. Telling me to go for walks at a time when I was having symptoms of heart problems. This has made my symptoms even worse. I have just been shown one email that said, why are you discussing long COVID with people who haven't tested positive for COVID? It's worth saying, I don't think a single contributor on the programme today has actually had a positive test for COVID because, as they have already explained in some cases, they tested afterwards or they couldn't get a test when they first got ill

because the testing system wasn't there. So just to make that clear. We've spoken to Emily and to Naluka. Let's bring in Gillian because, Gillian, you are, I hope you don't mind me saying this, you are our older contributor this morning you're 76 now and you live

in a beautiful part of the country. Just tell us exactly where you live. I live on the Clean Peninsula in North West Wales near Aberdaron on the side of a mountain and it's quite remote but there's a good community on the whole, a very good community.

Yes, that's, yeah. But COVID has knocked you for six, Gillian. Yes, yes, because like one of your speakers earlier, I was, for my age, very fit, I considered myself. Well, I've had good physical health all my life. I was a cricketer when I was, for my age, very, very fit. I considered myself, well, I've had good physical health all my life. I was a cricketer when I was young. And then in middle age, I did mountaineering and marathon mountain walks and runs. I love the mountains.

But as I got older, of course, I started playing golf. And that's quite an energetic sport. So, yes, I've considered myself reasonably fit and I'm very blessed with good health generally. This really has knocked me for six. And in terms of your lifestyle, you're living on your own. I say on your own, you've got your Springer Spaniel, haven haven't you with you yes um who i i guess perhaps has been going without exercise for the last couple of months that's a problem i used to i got to the stage where i couldn't walk

properly so i took him in the car at the mountain sat on a rock by and just let him scumper around which isn't really marvelous for him but of course there, there it is. But we're getting a bit better now. Yes. In terms of your state of mind, Gillian, do you mind just telling us how much this has affected you? Well, obviously, like everybody who's suffering with this, I think we do get terribly low, particularly when we feel we're getting better.

And we wake up one day, suddenly, oh, God, I feel a lot better. Thank God it's gone. And we just do a little bit, like changing the sheets on the bed or something, too much, flat out again for nearly a week. It's ridiculous. And after a while, and it's now seven months since I contracted this, after a while it gets you down.

And what really frightened me recently was I did suffer with depression in my 20s quite severely, but thank God that went away. But I started getting terribly irrational thoughts. I was worried about my state of mind to the extent that I really thought about ending it. Because I thought, I've got no relatives and I don't want to carry on like this you know I might what's the what's the point but of course my dog saved me in a way I looked at him I thought who's going to look after Garth um so but Julian can I just say um it's it's very distressing to hear anybody say that first of all so you have our very best wishes and this is tough and you're there on your own.

I know we've spoken before the programme just to tell everybody we had chatted before the programme today. But you've chosen this wonderful place to live, but perhaps not the easiest place to be when you're feeling wretched. No, I'm true. I've lived here 20 years. I come from Welsh anyway but uh I I'm not I've got good friends I've got friends in the golf club I've got good friends but I'm you can't keep picking the phone up and saying I feel dreadful I'll feel um so uh you know it's just um the case but I've got over that well got over that really uh now but it does it just does have an effect on one state of mind this this ongoing thing i know you know i've been lucky i didn't end up in hospital um i didn't go on to a ventilator i've been very very fortunate in that respect but my goodness everything else the fatigue the brain fog

the muscle aches the shortness of breath pins pinching needles, twitching leg muscles. It comes and goes. And as one of your earlier speakers said, now the insomnia. Because I've always been a very good sleeper. But no, insomnia. Now you can't even get sleep. That's really the final straw for a lot of people, I think. Just, Gillian, what's your take when you hear people saying, oh, I'm fed up with all that.

I don't want to wear a mask. I'm getting so, I don't, why should I obey the rules? What do you make of all that? Well, I really think, I'm not, I wouldn't dare presume to go up to someone and say, you ought to be wearing a mask. But I do look at them and I think, well, and particularly not against the young people, but young people who think they're invincible. And when if god forbid they get this and they get through it

at the first stages I wouldn't wish this on my worst enemy quite frankly that the that you know they're if it hits them it'll affect their lifestyle and rather than think about your granny think about yourselves because it's got to have an effect on you that you don't, you think you're alright No, no one is invincible and we all need to be

acutely aware of our own mortality here Gillian, thank you for that contribution Morag joins us now from Glasgow. Hi there, Morag. Hi, Rachel. Now, I know you're one of many of our listeners who is in all sorts of positions of responsibility, caring for a mother and helping out with your daughter and your grandchildren as well, and you've been ill. How are you feeling right now um i had a good week up until a few days ago and the best i felt for months probably about four months and i don't know if that's just a little bit too much

when i had a terrible day a couple of days ago so i'm just kind of starting to get back from that. It's just generally the same. It doesn't take much to push over the edge. You don't know what you're on the edge. Morag, I tell you what, we really want to hear from your experience because I think yours is a really important one. That line isn't good enough so we're going to call you back on the phone and just while we wait to do that because we do need to hear what's happened to Morag and what she's been through.

Let's bring in Dr. Elizabeth Kendrick, who is a GP, Medical Director of Hertfordshire Community NHS Trust. Elizabeth, good morning to you. Good morning, Jane. Now, you are somebody, you're overseeing a virtual long COVID clinic. That's been up and running since when? When did that start, Elizabeth? Our virtual clinic started in August, Jane, but before that we were looking after people in our community hospital wards, but also in our discharge home to assess team. So people who'd gone home from hospital with COVID. And we built on the experience we had of looking after those people. And we set up our virtual clinic in August and we now take

referrals from primary care as well which is really important because a lot of Covid and post-Covid clinics actually only take referrals for people who've been in hospital with Covid. Right but you don't you'll talk to you'll help anybody. Yes. Yeah. Okay. And it's really interesting. None of our contributors this morning have been hospitalised, but that doesn't mean they're not suffering the long-term impact. Can you, is it possible for you to tell us something about the people you're seeing with long COVID, Elizabeth? Do they have any similarities? Are there more women than men?

So we've seen 96 patients in August and September. We haven't seen particularly more women than men. It's been roughly equal. About 67% of those patients are from general practice rather than from hospital. And we're very keen to do some research as well to look at the differences between people who were looked after in the community and people who were seen in hospital. We find that obviously some people who've been in intensive care have some symptoms related to being in intensive care. So they potentially have some problems with their swallowing or their speaking if they've had a tracheostomy. And they may also have some problems and we've also seen problems been people who've lost their sense of taste and

sense of smell so they've found it really difficult to eat afterwards and then we but the majority of problems that we've seen are people with breathing problems ongoing shortness of breath particularly on um exercising and we've also seen people um with the fatigue that you're described that the listeners have described and people are describing and also kind of um more cognitive issues kind of mental health fog and things problems with their memory some people have described problems with word finding right yes well that is something that people have mentioned to me actually they're struggling to find the right word. Some people are saying that being overweight, over 50 and female, all are risk factors for long Covid. Is that something that you've encountered?

Not particularly at the moment um i think that um we've certainly seen um people of the people we've treated some of them um have been um more overweight than others but it's not we've not we're too early on i would say at the moment to see a particular trend in the people that we've been seeing and we are obviously collecting all of that data and as time goes, we may be able to get a better picture. But at the moment, there's a whole variety of different people, people who were really well beforehand, people who had lots of chronic disease beforehand. So it's really very varied from person to person. And I think also you have to think about the fact that some people with COVID have ventilated. So on a ventilator for a very

long period of time and those people who are on a ventilator for a long period of time may have problems after that as well just by having muscle weakness sure I was going to say my my limited understanding of this is that anybody who's been on a ventilator will be really quite poorly for quite some time afterwards it's not a it's not an instant cure at all is it that absolutely but we've seen some really great stories of people being able to go home and um being rehabilitated in our community hospitals coming in really unable to even get out of bed and walking out of the community hospital so that is just fantastic to see right forgive me if you already answered this because there were various things going on earlier in our conversation but

um you say you you're treating them actually if you can quite briefly elizabeth tell us how you treat people at your long covid clinic um yes because of the variety of symptoms that we see we think triage is really important to these people so actually collecting which symptoms that they have so that we can better direct them to different resources so some people will go for pulmonary rehabilitation so they'll go for specific exercises to help with their breathing and some people would be referred to our chronic fatigue service so they will be given help with fatigue and pacing and things like that some people will need just generalized physiotherapy because of muscle weakness and problems with really getting about and so we um some people go for general physiotherapy some

people will see our occupational therapists so they may help with people getting back to work some people will see are dieticians, particularly if they're struggling with loss of sense of smell and taste and things. And some people, and we also have a fantastic GP working in our service because of the variety of symptoms that people can present with. And so she's really key in triaging the patients. Right, and getting them the right help. Yeah.

Getting them the right help. Sorry to interrupt you, Lisbeth. I just want to bring it. I'm glad you mentioned your GP because Adam has tweeted to say, read people's long COVID experiences. You can make it sound like all GPs are awful. As with everything, there are some amazing GPs

and some lousy ones. Of course there are, Adam. And I think we have made that clear. There are some brilliant GPs. Our first contributor, Emily, was full of praise for her GP service, so it isn't always the case at all. I'm really keen to go back to Morag in Glasgow because she was telling us about what she's up against. Morag, are you back with us now? Yeah, hi, can you introduce me? Yeah, that's a lot better. Thank you very much. So you were just telling us a little bit about, first of all, you're caring for your mum as well as everything else, aren't you? for her night shift, day shift on a rolling pattern

it's quite difficult to get the full chance here other than being a helper Do you know I'm really sorry to do this to you Morag we're going to have to call you back on the phone the phone's this old fashioned bit of technology that can actually be quite handy and we're going to go and use it now

because I'm determined to get Morag on the programme that will happen Nisreen who's still with us, who's our associate professor of public health. Nisreen, is there anything that you've heard that you would like to pick up on? And particularly, tell us a little bit about what you've heard so far, what you think about it. Sure, Jane. I would like to pick up on the email you received about all the people on your program not having positive tests and I think this is really important because I'm concerned really in the in this pandemic of the black and white pictures we're seeing there are two black and white pictures here one is we're talking about

so initially in the pandemic you it's either you get to very severe COVID and die or it's very mild and you just shrug it off very quickly and now we're seeing there's this middle ground of long COVID but also the black and white picture of who has who has COVID or hasn't we're seeing metrics all the time about the number of cases and actually what we see is the number of lab confirmed cases and there are we know we know that the tests that we're using to detect the virus of medical, you know, the PCR test is not accurate enough, lots of big, big chance of false negative, but also it really depends on when you test for the virus. And there are all sorts of reasons up to even to this day, why people can't get the test, don't have access, won't get the test. So really that picture, what we need for long COVID

is proper case definitions, not solely dependent on tests, because that would lead to some sort of discrimination in terms of receiving recognition and medical investigations and care. So that we need to do better in that. Can I put something to you that I'm not surprised this has come up, but this is from a listener who says, I've got great sympathy for long COVID sufferers, having experienced similar problems myself.

I've had ME for over 20 years, and all I've heard so far could be said about ME, e.g. possibly more women than men, GP's not helpful, brain fog, poor sleep, relapsing and life-defining fatigue. Nisreen? I think there's a lot in terms of the clinical picture that is shared with ME and chronic fatigue syndrome but again I think I think ME itself and CFS chronic fatigue syndrome are still to this day not very well understood.

They definitely need these conditions need more medical attention. But I think for long COVID, it's so early on and the symptoms are so wide ranging in that some people don't even not necessarily have the fatigue, although that seems to be the common thread and the very common symptom. So I think there's a lot to be shared and really, really hope that whatever benefit we can gain from studying and paying attention to long COVID will definitely, you know, go across to the ME CFS stations as well. And what Elizabeth was describing at her long COVID clinic, I mean, that sounds like something that should be, I mean, really could be of use and should be rolled out everywhere. Absolutely. Long COVID clinics, we're waiting for them to become more common and I think in addition

to just the receiving the treatment I think people as I said need proper recognition of their condition because as you've heard from everybody else the anxiety is huge because because people need that recognition you know they are suffering symptoms and it's not all in their heads. So that formal clinical recognition based on sensible clinical definitions is needed. But also, even before going to rehab, people need to receive proper medical investigations because there might be treatable conditions that could be triggered by COVID that need to be detected first before deciding on what form of rehabilitation they need. And the Long COVID Clinic will hopefully be able to offer that. Thank you so much for that. Morag in Glasgow, this time we are going to hear from a Morag, right? As if you haven't been through enough this year. So you've got your mum, she is in her 80s, she has dementia. You've got your

daughter who's trying to work in the NHS and two grandchildren. And you've had Covid. Yes. That just about sums it up. How are you feeling today? I was having a really good week a couple of weeks ago. I best had felt for months. And then I think I just did maybe a wee bit too much, even though I'm trying to do hardly anything.

And I had a really bad day again where I just couldn't do anything. So just the last couple of days, I'm just kind of trying to pick myself back up again. And who's looking after you? Me. I just look after me. I've got two cats and a dog. They help as best they can. Well, actually,

I expect they do, but there's obviously a limit to what your cat can realistically offer you at ten past three in the morning when you're feeling wretched. What about the outlook for you, Morag? I mean, is there anything that is likely to improve in the near future? Well, I just don't know when I'll be better.

Some people start getting better around about this time, some people don't. I'm at seven months, there are people in the support group nine months, and some have got better and left the group, some haven't. So it's very difficult to say I've not I've never had my heart checked to see if that's been part of the problem there's a lot of

known issues that can happen with the heart following COVID I'm still waiting for the result of a CT scan to check the breathing issues in my lungs. I was very ill for about three months. I could hardly stand during that. That's unbelievable, isn't it?

After everything else that's happened. Morag, I just wish you the very best. I'm so sorry that has happened as you were telling us about how you've been coping or attempting to cope. I think we can all agree that she's really been through it. So Morag was outlining her variety of caring responsibilities. Let's go back to our earlier contributors, Niluka and Emily. And Niluka, your children are pretty young, aren't they? You've got a couple of young lads, nine and seven. Is that right? Yeah, that's right. Nine and seven.

Yeah. What about parenting through all this? How has that been? Oh, it's been such, you know, it's been such a challenge, especially during the summer holidays when the children were home. There weren't so many clubs to keep them occupied as normal. It was really challenging. So, you know, being able to being having to disappoint them and say, sorry, mommy needs to lie down or mommy can't run after you. So we had a lot of times where my husband would have to take the reins and take them out even when he was working. Obviously, them going back to school now has helped give me a chance in the middle of the day to rest again. But it is difficult because the children don't quite understand why is mummy not you know swimming with us why is mummy not running around with us um so i think they've they've noticed the change and it's um they've taken it in their

stride but of course it doesn't stop their you know they're wanting to enjoy their their time off of course not i think you've actually got one home at the moment who's been sent home as a result of a case at school is that right that's right yes, there's one at home right now. Right. OK, well, they're being impeccably well behaved. They can't hear a thing. Emily, in Newcastle, you've got two daughters, actually, haven't you? That's correct.

How has all that been? It's been quite, I mean, it's been hard for them. My youngest just started high school this academic year and my elder daughter who's 14 has had to kind of do more of the things that i would have wanted to do because i've just not been well enough um so she's i've been quite reliant on her to do that and my husband's been great but you know it's not it's really affected family life the girls they're old enough they're 14 and 11 though so they're old enough to do stuff themselves. But still, we do do stuff together as a family,

and I'm just not able to be as active with them as I would like to be. And we often do associate anxiety with our teenage years. It can't be easy for young girls, I was going to say in particular, but actually for any teenagers, to see their mum just not being quite the person they knew her to be yes it must be I mean it is it's really hard for them my I'm very lucky that my girls are very caring individuals and so they they remind me say mummy don't do too much remember you know just make sure you rest mum and you know they'll go and get me a cup of tea which is lovely um but at the same time I you know I feel bad for them because i want to be the fun mum and be able to do stuff and be active and go rock

climbing with them um and instead you know i'm having to rely um on them coming up with stuff with their own initiative which i guess is good for them but at the same time it's it's frustrating for me and in terms of the way i want to parent no and in terms of your employment or employment prospects um yeah unfortunately um at the moment I've been off sick for six months and I'm currently employed on a fixed-term contract that's coming to an end next month I've been employed on fixed-term contracts before and it's normally quite easy for me to get another role within the the um the area I work but um yeah this this time, just with having long COVID, I just can't do it. I've been for an interview

and it was an absolute car crash. I can't, I'm not able to think on my feet anymore. I have expressive dysphagia, so I lose words. When I'm speaking, and I try and talk around it, but yeah, it's, with the interview, I think and talk around it. But yeah, it's with the interview, I think I said to you before, Jane, that with that interview that I did, I wouldn't have appointed me either.

So yeah, that's the situation we're in. So I'm about to be unemployed. Right. Okay. Thank you very much for talking to us. What can I say? I wish there was some, there's just literally nothing that I can say that can offer anything approaching constructive consolation. But I'm really just so proud of the listeners who've come on the programme this morning and been able to tell us about their experiences.

You heard from Emily and Naluka and from Gillian and Morag and particular sympathy to Morag, who we just kept losing there. But Morag, best of luck to you. hope things get a little bit better for you on Dean Sherwood listening to all this it's not going to put you off your campaigning is it because there's a lot of suffering out there right now it certainly isn't and I think what we really need to start looking at now is the employment issue because these people are there are many many very youthful people who have long COVID who would have been major contributors to the economy. And these people can't work. Sick pay, statutory sick pay runs out at, I think, 28 weeks. There are people who cannot return to their jobs.

They're being laid off. It's very, very difficult. And although we do have a lot of people out of work at the moment, and maybe that's therefore not pressing in terms of the government, I think we have to take into account that there's going to be a big hole in the economy because there's an awful lot of people who can't work. Obviously, this programme, Women's Hour, focuses on women. And we do believe that more women than men are likely to get long Covid. But actually, it's cropped up several times in the programme that that, based on what's actually happening out there, might not be the case. I just wonder whether more women are inclined to or able to acknowledge their own suffering, more likely to join groups like your own. What do you think of that? Yes, I think that is the case. I think that women join support groups.

They sometimes join support groups on behalf of their husbands. Men don't engage as much with their health. Well, perhaps men just have never been expected to. I think we've got to be a bit careful what we say. Well, maybe they feel under pressure to push through. But we do have quite a lot of men in our support groups and quite a lot of young men. And they are struggling as much as women. And I think we won't really know the true figures until there's a proper survey that maybe we're hoping the Office for National Statistics may carry out so that we can really get a proper picture as to how many people have long COVID, who they are, what the age breakdown really is. Ondine Sherwood, who is one of the founders of the Long COVID SOS campaign. Now, in that programme, you also heard from some wonderful contributors, actually.

Dr Nisreen Alwyn, Associate Professor in Public Health at the University of Southampton, and Dr Elizabeth Kendrick, who's a GP, Medical Director of Hertfordshire Community NHS Trust, and our listeners, Emily, Julian, Niluka, and Morag. We made several valiant attempts to contact Morag, and I'm just so sorry that none of them quite paid off. But I did have a chat to Morag first thing this morning, and I just thought she was just a brilliant example of a Woman's Hour listener who has just got so much on her plate an elderly mother, a grandchildren, a daughter she's trying to help out and she's really been unwell herself but she's keeping on going and I know there are many many women like her out there at the moment just doing their level best so our thanks to everybody who

is prepared to come on the program this morning um now to your reaction to everything that was said uh hetty says i have it it's ghastly couple of things to try acupuncture and reflexology not cures but can really help with energy levels and sleeping and that's been her experience umromyalgia, which is also primarily female, shares many symptoms, brain fog, fatigue, finding words, a problem, etc. We've had decades of being told it's in our heads and we're hysterical. Why such a shock about the same perception of long Covid? Well, actually, I hope I expressed that I wasn't shocked. I did, in fact, say that this is something that has cropped up a lot in the past. But thank you for that. Another interesting one here.

Many of these symptoms are similar to multiple sclerosis. Given that none of your contributors have had a positive test, is there a risk that they are incorrectly attributing symptoms from other conditions to long COVID? Another listener says, why are we creating a new condition of long COVID? There is an existing condition, ME or post-viral syndrome, that explains it. The same symptoms, same source and chronology. Bad news, it's for life. So let's join up the studies and research on both, says that listener. My wife has suffered with ME for years and it seems all the same symptoms are found with long Covid. Fatigue, brain fog, pins and needles, breathlessness etc.

Hopefully this attention will get some much needed research done in this area. Amanda says I'm pleased to hear this programme. So many who have had the virus had no opportunity to get a test. And the tests at the time were for essential workers. But the experiences heard on this programme this morning show what is happening to people all over the country. Laura says, I've been really struggling for the past couple of months after being very poorly with what was assumed to be COVID back in March. The nurse believes it to be long COVID, but not a lot can be done. I had been running and doing boot camp previously. Now I am consigned to the sofa, says Laura.

Another listener, I'm 62. I'm a competitive coastal rower, and I've had long COVID since the beginning of May. Still not back at work. Thank you for highlighting long COVID. From Monique, it almost killed me at 46, my three-year-old son and my husband. Long COVID case here, slow road to recovery. Another listener, unless you've experienced this utter non-stop bone crushing fatigue,

it is really hard to understand. Long COVID is very likely another arm of this monster we need to be believed by doctors and society and need more research as soon as possible siobhan says i wanted to empathize with your speaker who said she had felt like it was all too much at one point i was a previously fit and healthy secondary school teacher who became ill in March and I still suffer now with fatigue, dizziness and muscle and joint pain. During the first four months of my illness when I was at my most ill, I too felt like it might be simply too much to endure. Luckily I have a super supportive husband who's been an amazing carer. However, my inability to walk, cycle and be active with my teenage son like I used to is something I really, really miss.

Yes. Thank you, Siobhan, for that. That was just a bit of empathy for Gillian, our listener living in that beautiful. I know that part of Wales. I used to go there on holiday as a child and it's just absolutely gorgeous. But she's there on her own with the springer spaniel and she's had really low moments. Thank you to everybody who just wanted to say

that they want to send their love and best wishes to Julian. Kim says, I'm sitting here listening to your contributors and I'm crying. This is me. My GPs have been great with three courses of antibiotics when the flare-ups have been acute pneumonia type symptoms. Yesterday, I had the results of a series of blood tests,

all normal, and the COVID antibody test was negative. Now I feel like a fraud and I don't know what to do next. I really identified with your listener in Wales. That's Sir Gillian again. I'm on my own, but with my whippet who's kept me going. But I am so fed up with this. The two major flare-ups seem to have been brought on by bouts of exercise. There we are, Kim, with echoes of what Gillian has been through and sending her best wishes to Gillian.

So if nothing else, Gillian, I hope you hear this and understand that people are sending their very positive thoughts to you and feeling that you were speaking for them when you came on the programme today. So thanks again for doing so. And just to be clear about long COVID clinics, because our guest Elizabeth Kendrick was the medical director of Hertfordshire Community NHS Trust. She's had a long COVID clinic up and running virtually since August. I should have mentioned, and that was my problem, my mistake that I didn't, but the NHS is offering long COVID sufferers help, we're told, at specialist centres across England. This is something that was announced on the 7th of October.

The NHS chief executive announced that £10 million is to be invested this year in local funding to help kickstart and designate long COVID clinics in every area across England to complement, it says here, existing primary community and rehabilitation care. In Scotland, Lesley McNiven, who's somebody who's been on Woman's Hour, she's a leading Scottish long COVID campaigner, says that Scotland seems to be resisting long COVID clinics at the moment. Lesley believes it's a huge mistake. And in Wales, we have a statement here by the Welsh government spokesperson who says we recognised by spring that evidence was developing on the longer term impacts of COVID-19. In response to the need for rehab of those affected by coronavirus, we published a national rehabilitation framework and guidance.

It's based on the evidence currently available and will continue to be updated as we continue to learn and improve our understanding of this disease and its long term impacts. So that was from the government in Wales. I meant what I said at the start of this programme. The truth is sometimes the only answer is, the only right answer, the only sensible, responsible answer at the moment is we don't know. And that's just a curiously unsatisfactory answer. But nevertheless, it's sometimes at the moment, the only accurate one. So thank you to everybody who took part today. Hope it's been of some use. Hope it hasn't worried you too much. Woman's Hour is back with the highlights of the week tomorrow afternoon,

of course, in podcast and radio form. And then we are back live Monday morning. And one of my guests on Monday will be one of the co-founders of Black Lives Matter. Hope you have a reasonable weekend. A new podcast from BBC Radio 4. Children of the Stones. A village is the sort of place people get murdered in in old TV shows. A village surrounded by an ancient stone circle.

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