The ME CFS Foundation South Africa

Interview with Drs Nina Muirhead and David Strain on ME/CFS, Long Covid and the dangers of exercise

BBC Radio 4: Woman’s Hour – Dr Nina Muirhead and Dr David Strain

Transcript of the Interview

Woman’s Hour Presenter 

Some Tweets that come in and in an email entitled ‘I don’t know why I bother’. Aylssa wrote into Woman’s Hour out asking for us to talk about ME having lived with it for 10 years. 

Woman’s Hour Presenter 

And as she put it, spent at least seven of them nagging woman’s out to discuss it. So, we are and in light of long Covid too because as she writes in her passionate email. 

Woman’s Hour Presenter 

The ME community has been flagging up the connection between what we experience a post viral illness, which robs us of our lives and long Covid. Even before long COVID started to emerge, the ME community was discussing the dangers of a post viral chronic illness arising from exposure to the Covid virus. 

Woman’s Hour Presenter 

So that’s from Aylssa. I certainly hope Aylssa is listening live this morning ’cause we are listening to her. Another listener, Judith who has asked for the same discussion, suggesting a guest which is always very helpful. Doctor Nina Muirhead, a dermatological surgeon, who as she says, is taking a lead on educating doctors about ME and I’m very happy to say Doctor Nina joins us. 

 Woman’s Hour Presenter 

Now she has ME herself and is a director at Doctors with ME. Our listener, Judith says it’s also a women’s issue because three out of four ME sufferers are female and women are also more likely to experience long Covid than men, and we’re also joined by Doctor David Strain, who has long COVID himself British Medical Association’s lead on long Covid and medical adviser to Action for ME. 

Woman’s Hour Presenter 

So, a warm welcome to both of you, Nina. If I could start with you with the absolute basics, what is ME? 

Dr Nina Muirhead 

So, ME is a complex neurological disease and it’s characterised by debilitating fatigue, post exertional malaise or symptom exacerbation after doing mental or physical tasks where for hours, days or weeks afterwards, you have multisystem symptoms, unrefreshing or disturbed sleep and cognitive impairment. But, actually the list of symptoms is endless. It involves dizziness, palpitations, fainting, chest pain, shortness of breath, hot flashes, chills, inability to do what you could normally do in the weeks or years before getting ill, you can’t do it to the same level again. 

Dr Nina Muirhead 

And most people then have to reassess what they can do in terms of their work and in terms of their social life. It is completely debilitating for some people who end up bed bound and tube fed. 

Woman’s Hour Presenter 

And yes, and I think you know that range is important to communicate, isn’t it because it can affect people in different ways and to different degrees? Is it true that you, you had scepticism about this before you yourself experienced it? 

 Dr Nina Muirhead 

Yes, so as an NHS doctor, I probably saw hundreds of patients with this condition before I got ill myself and firstly, I had no empathy for how severe it was and secondly, I didn’t recognise it in many patients who presented with all of these symptoms. 

 Dr Nina Muirhead 

Having become ill myself following glandular fever, it is very obvious the symptom pattern and the biggest gap is in education. Doctors aren’t taught to recognise this disease or even empathise with how severe it can impact the patient and their family members. 

Woman’s Hour Presenter 

Do you think that because of long Covid, then that there will be better recognition or there will be, it will lead to something positive because of that? 

 Dr Nina Muirhead 

I hope so. Um, there are approximately an estimated quarter of a million patients with ME/CFS in the UK and they have been treated for years with neglect and misunderstanding and the new wave of post viral patients with multisystem symptoms who are not wanting to be dismissed as anxious by healthcare professionals will hopefully shine a light on the plight of all of those who’ve been ignored and left in darkened rooms. 

Woman’s Hour Presenter 

David, let me bring you into this good morning. 

Dr David Strain 

Good morning. 

Woman Hour Presenter 

How widely accepted is it, or has it been in the past that ME is caused by viruses? 

 Dr David Strain 

Amongst those working in the ME/CFS arena it is recognised as a post viral syndrome. One of the hallmarks of CFS and ME are that other blood tests are normal and that has led to past the problem that Nina was describing, and because there is this almost undying faith in existing medical technology. 

 Dr David Strain 

If tests all come back normal, then the assumption was there for many in medical school that normal tests equal not a physical problem and it was easier to accept that than it was to accept the fact that we just don’t have the right test yet, that we just don’t fully and fully understand what the body does goes through during infection. What it goes through in healing from an infection and what the aftermath of that healing process would be. 

 Dr David Strain 

One of the advantages that we’ve got with seeing long Covid is that all of the people who are suffering yet they’re the 2,000,000 or so that have suffered long Covid have all had the same trigger and of course that’s been something that’s not there for CFS and ME. There are many different viral triggers that can cause these long term conditions that Nina described so eloquently. And just thinking about the that that your listener there, that wrote about that three out of four people suffering with CFS and ME are women. 

Dr David Strain

That’s also the case for long Covid. We’ve seen far more women with long COVID, and this is a massive disease area that actually if it had been appropriately researched 10 to 15 years ago when people like Nina were first getting this, we would be a lot further ahead, with long Covid today. 

Woman’s Hour Presenter 

Do we know why David that it’s more women than men? 

Dr David Strain 

We don’t. We believe that this is an autoimmune disease. We believe that it is something to do with your body not finishing its activation against your infection, and there are many other examples of autoimmune diseases that are more prevalent in women and there are you know genetic differences that account for this and there are diseases like rheumatoid arthritis, Crohn’s disease, these sorts of diseases that are very well recognised ’cause we have identified the antibody that says that these are more common in women. 

Dr David Strain 

We believe that long COVID is more prevalent in women. There great team at Imperial (Imperial College London) that demonstrates the few of the antibodies that are there. The problem with CFS and ME is because there are so many different viruses that can trigger it, it’s likely that there are going to be several different antibodies, autoantibodies are created that all give a similar effect but have a different underlying nature, which means there isn’t one unique identifier across the board. 

Woman’s Hour Presenter

Nina, just to come back to as you’re talking about this, I’m aware that we’re hearing from chronic fatigue syndrome mentioned and ME and or are they interchangeable? 

Dr Nina Muirhead 

Uhm, no. Most of the patients like to have this disease referred to as Myalgic Encephalomyelitis, or Encephalopathy – which reflects the neurological definition of the disease. Chronic fatigue is a real underestimate and it often causes the general public to assume that the illness is not as severe as it is. 

So, with exercise, people with ME have reduced cardiopulmonary function, reduction in their anaerobic threshold, cognitive impairment, which is exacerbated after exercise, and prolonged recovery time, and increased acidosis – exercise makes these people sicker. 

Woman’s Hour Presenter 

So that’s a distinction that we need to be very clear about, because of how affects treatment. 

Dr Nina Muirhead 

Yes, and it is something absolutely it affects treatment, which is why patients report that graded exercise is making them worse and it is something that needs to be taught at medical school and to medical and healthcare professionals. 

Woman’s Hour Presenter 

Let’s get on to treatments then because new NICE guidelines, National Institutes of health and care excellence, that’s the body responsible advising doctors on treatments which was meant to come out last week for ME have been delayed and what’s been called an unprecedented move. 

Woman’s Hour Presenter 

There’s been serious disagreement over how to treat those with ME. David, what do you think the treatments should be or where do you come out on this? 

Dr David Strain 

And so, as Nina says, exercise makes people with this worse. It does cause symptoms to get worse. It takes longer for people to recover from a bout of exercise than the actual improvement in aerobic capacity that they could potentially get from that exercise. And so, it has to go down this pacing route. 

Dr David Strain 

Now I say this and there are some people who would suggest this is controversial, or some people who would say the exercise had been the fix for them, and there are other sources of fatigue that exercise would be the source for. But as Nina says, Myalgic Encephalomyelitis, or Encephalopathy 
and basically, that is a physical condition, that means that the body doesn’t respond naturally, so it has to be pacing.  

Dr David Strain 

It has to be doing things in small batches. Uh, the analogy that we use in the clinic is quite regularly is that it’s like having an old smartphone that you know that the battery is going to die very quickly, even if you start the day with a full battery, 20 minutes in, you could be exhausted. And if you wait until the battery is dead, if you wait until there’s nothing in there, it takes much longer to reboot the phone than it does from sitting down. When you’re at 20 or 30%, recharging it at that point and then going on using it and it’s this whole pacing concept. 

Dr David Strain 

But the problem is that the research hasn’t really focused on the right treatment for this disease, and part of that is with the stigma that’s gone behind. The so called ‘yuppie flu’ was called in the 80s when I was in medical school and we were taught that this is a functional disease with no abnormalities. We need research. 

Woman’s Hour Presenter 

You need the research, Nina. What would you say in terms of that treatment question? 

Dr Nina Muirhead 

Uhm, well, I agree completely with David. We need far more research. There are supportive treatments for symptoms, melatonin, anti inflammatories. 

Dr Nina Muirhead

Um, symptom treatment for orthostatic hypotension, PoTS medications, beta blockers, Ivabradine, Midodrine. They can be really helpful for patients to get some increased function and quality of life but actually in the first place doctors have to believe the patients they have to listen to how badly they are affected because what they see in the medical encounter is not representative of how ill that person is. 

Woman’s Hour Presenter 

You’ve got hope now, Nina, if I can just cut in there for a moment because of the long COVID elements of this, that perhaps that research will now be forthcoming, and this will be taken more seriously ’cause the anger in Aylssa’s email was palpable. 

 Dr Nina Muirhead 

I’ve always had hope and I do have a lot of hope. Uhm, but I think there are major problems and the nice delay is the tip of the iceberg. 

Dr Nina Muirhead 

What’s happened here? Is there has been a lack of infrastructure set up in the NHS to actually deal with these patients. 

Dr Nina Muirhead 

They need a consultant led service GP’s need to be better educated and equipped to deal with day-to-day problems. Patients need regular reviews 

Dr Nina Muirhead 

Many of these patients have comorbidities and other autoimmune conditions or family history of autoimmune disease which also needs dealing with separately, they can get urine infections, chest infections, just like everybody else, but often present late or delayed or don’t present for cancer screening because they’re too sick to attend, so the whole infrastructure of the service to provide access to these patients is not well equipped and it has come to a head over long COVID, if we’d have sorted this out, like David said, 15-20 years ago, we wouldn’t be struggling to provide a multidisciplinary team service for long Covid patients now. 

Woman’s Hour Presenter 

Doctor Nina Muirhead thank you and Doctor David Strain. Thank you to you and I hope to Alyssa to Judith and to anyone else who wrote in so there were several of you, that perhaps goes some way to explaining how things may change and why things haven’t to now and what needs to be done to move forward at huge response. 

Source: https://meassociation.org.uk/2021/08/bbc-radio-4-womans-hour-dr-nina-muirhead-and-dr-david-strain/

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