BBC Radio Ulster will be covering ME/CFS (Wednesday 2nd February) on the lunchtime Talkback programme with presenter William Crawley.
Dr Charles Shepherd, Honorary Medical Adviser to the ME Association was interviewed alongside people who have ME and Joan McParland from Hope 4 ME & Fibro Northern Ireland.
The item on ME/CFS was broadcast around 1pm for about 30 minutes and there was an opportunity to phone in with questions.
Listen via the BBC website or alternatively, visit our Youtube channel to hear the interview.
Transcript
Presenter William Crawley
Welcome back everyone. Just gone, well 6 1/2 minutes past one. We talk a lot these days, don't we about long Covid, the long-term effects of coronavirus that some people are still struggling with and will struggle with for months, possibly years in some cases.
Presenter William Crawley
Extreme tiredness, shortness of breath, exhaustion after even basic physical activity, problems with memory and concentration, that's sometimes called brain fog, insomnia, really struggling just to sleep at night or joint pain, muscle pains, that kind of thing. Some of you have talked to me on air about your experience of long Covid and it has been devastating in so many lives.
Presenter William Crawley
Those symptoms, though they do sound familiar, don't they? To the thousands of people in Northern Ireland who have been living with the chronic fatigue condition called ME and for many years people here have been with ME have been telling us that that condition has not always been taken seriously enough by the health service or by some doctors.
Presenter William Crawley
New guidelines have now been published, they come into effect today for ME. The guidelines state that it's a complex and chronic medical condition, and the outline steps for better diagnosis and better management. So, our question for you, maybe you have ME, please pick up the phone and share some of your thoughts on this, your experience of ME, maybe you've seen as I have what ME can look like in the lives of friends or in family members.
Presenter William Crawley
Please tell us if you think it's being taken seriously when you look at how it has affected the lives of those around you. You might have a child, you might have a family member living with ME and you see the effects of it. What kind of care is available? Or do you think they have been forgotten over these past years?
Presenter William Crawley
Doctor Charles Sheppard is with us, medical adviser to the ME Association. Charles welcome, good afternoon to you.
Dr Charles Shepherd, MEA Honorary Medical Adviser
Good afternoon, William. I mean first of all can I just say I think you've summed up the current situation both nationally and in Northern Ireland extremely well. I've been over to Northern Ireland, many times in the past 20 years, and particularly being involved with Joan who's on the programme and all the stuff that that she's done to try and raise awareness of this condition and get a service, a specialist referral service in Northern Ireland that's fit for purpose.
Dr Charles Shepherd, MEA Honorary Medical Adviser
I have to say to start this programme, I think it's a national scandal in Northern Ireland that you do not have a specialist multidisciplinary referral service where people can be referred from GPs for more help where necessary with diagnosis and management of this awful condition.
Presenter William Crawley
And the Joan that you mentioned, Charles is Joan McParland, excuse me, Joan McParland, who is chair of Hope for ME and Fibro Northern Ireland. Welcome Joan. Good afternoon to you.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Hello William and thank you very much. have personally been waiting on this opportunity for 22 years and nine months to speak about ME and the situation in Northern Ireland.
Presenter William Crawley
That is the point 22 years ago when you contracted a virus.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Yes, I am now. Before we start, I have to say that I have seen the NHS at its very best and when my husband and son were involved in a car accident in 2007 with in inverted brackets ‘real illness’ and the GP care I see my elderly mother received to this day is exemplary.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
But since getting an acute viral infection in October 1999 leading to ME, it has been a very different demoralising and shocking experience of health care. I mean, no doctor intentionally goes out to do harm, but if not armed with the correct training, unfortunately that is what is happening to ME patients to this day, but thankfully the NICE guidelines and science has moved on.
Presenter William Crawley
Joan, how many people do we think have me in Northern Ireland today?
Joan McParland, Hope 4 ME & Fibro Northern Ireland
From I have started the campaign in 2011, the figures were seven and a half thousand and that has remained so to this day because nobody counts them. Uhm, you know half the people aren't diagnosed. You can't get a diagnosis and you're running from pillar to post trying to get it and what we have to do is bring over a medical consultant from London to see patients here and we also bring over a paediatric consultant to see children in Northern Ireland. We have been doing that for 11 years now to try and help the damage that is done when they're told to exercise and push through this disease.
Presenter William Crawley
Charles, can you fill in the gaps for a lot of the information that we need to understand what ME is and its causes or what we know about the causes. Does it always begin with a viral infection? For example, are there different ways in which people find themselves living and suffering with ME?
Dr Charles Shepherd, MEA Honorary Medical Adviser
Yeah, and what we know from I mean, this illness is called Myalgic Encephalomyelitis and if you just split it down, the M stands for ‘Myalgic’ which refers to the muscle involvement and the muscle symptoms, ‘encephalo’ means brain, so there's a lot of brain symptoms and ‘itis’ means inflammation and so people have Infective type symptoms which follow on. We think around about 250,000 people in the UK have got this condition, we think about four per thousand is the numbers, so back of envelope I think population of Northern Ireland around about 2,000,000.
Dr Charles Shepherd, MEA Honorary Medical Adviser
So as Joan said the best guess, we can make is there's 8000 people in Northern Ireland. With this around about that, and most important of all, we know that about 25% of those are going to be severely or very severely affected, so that means their housebound/bedbound, and at the very extreme they may be tube fed or almost paralysed.
Dr Charles Shepherd, MEA Honorary Medical Adviser
The history that most people give for this is that they're a fit young adult. Most people start this illness in in their 20s, 30’s, 40s, although it can affect any age group and it affects a lot of children and adolescents as well. But they get this infection and they don't recover and this is just like long Covid.They're going back to the doctors weeks for several months, after they have this infection, it can be any type of infection, continuing to feel really sort of unwell flu like.
Dr Charles Shepherd, MEA Honorary Medical Adviser
And they've got these very characteristic 4 very characteristic symptoms, which again overlap with long COVID you named them to start with and they are very simply this this very debilitating fatigue which is activity induced, it's made worse by exercise, the brain fog or we call it cognitive dysfunction in medical terms, which is problems with short term memory, concentration, attention span. There's a part of the brain which controls your pulse rate and your blood pressure, and that goes wrong, and this is what we call in medical terms dysautonomia.
Dr Charles Shepherd, MEA Honorary Medical Adviser
So. people feel faint when they stand up, they can't maintain a standing position and then they have a sleep disturbance very early on, it's quite often what we call hypersomnia. They want to sleep for excessive periods of time, but as time goes on that changes to a more sort of just erratic problems with sleep unrefreshing sleep in particular so they wake up even if they've had a good night's sleep and they just do not feel refreshed.
Dr Charles Shepherd, MEA Honorary Medical Adviser
And on top of that, they have this very characteristic diagnostic symptom called post exertional malaise, whereby any type of exercise or exertion beyond what the person can cope with just worsens all the symptoms. And I I'm was a member of the committee that produced the new last guidance of.
Dr Charles Shepherd, MEA Honorary Medical Adviser
Very major step forward in in the in the both the diagnosis and management of this illness and one of the key things which goes back to this lack of service provision in Northern Ireland is that we made a very specific recommendation in this guideline that people need to be diagnosed early and accurately within three months.
Dr Charles Shepherd, MEA Honorary Medical Adviser
Or at three months from the onset of these infection induced symptoms and at three months they then should be referred to a specialist referral service hospital based service, where the diagnosis can be confirmed because there's a lot of conditions can get mixed up with me and people can get a misdiagnosis and expert help on management.
Dr Charles Shepherd, MEA Honorary Medical Adviser
And now that we've got a new nice guideline which is abandoned this awful treatment of graded exercise therapy (GET) provides very sensible advice, guidance on activity and energy management, symptomatic management, what to do in relation to schooling, education, employment, and everything else that goes with it. We need to set up this service in Northern Ireland, so that people get this help.
Presenter William Crawley
Well, Joan, that raises the question, doesn't it? Given that we see these symptoms, we see these conditions in people around us and doctors have people coming to them with these conditions. Why haven't we had such a service?
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Oh dear, I'm 28 pages printed out across this table, William, I actually don't know where to start
Presenter William Crawley
Well, let me let me let me ask a more direct question and just cut to the chase.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Yes please.
Presenter William Crawley
Is it because there are people within the healthcare world, some doctors who haven't taken this condition seriously over the years? Maybe they've even disputed whether it's a real thing over the years.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Yes, absolutely. You could spend years searching together diagnosis. You can go to, I was lucky my GP who was very honest. He said ‘I don't know anything about ME, but I will support you’ and through 10 years, the first 10 years I lost of my life he and I actually learned together and now I have a lovely new GP and the last thing she said to me about ME was ‘I would love some education’.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
The charity has actually there's no education provided during medical training schools, so the charity has been in Queen's University, we educated 600 medical students over a period of two years, gave out information packs. We have developed a VR experience which is going to be launched next week. We're sending out VR headsets to GP surgeries.
Presenter William Crawley
Is that to give them a sense of what it must be like to live with this condition?
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Yes, to give them a real life experience via a VR headset, what ME is like, how it happens and so the whole thing hinges on medical education, which we are very, very focused on in the charity.
Presenter William Crawley
It's extraordinary, though, isn't it? Joan, isn't it extraordinary that we need to do that with some doctors?
Joan McParland, Hope 4 ME & Fibro Northern Ireland
I can't believe it. What other disease does the patient lying in the bed with an iPad? As I spend 80% of my life doing because I can't be upright for very long. What our disease leaves a patient lying in a bed, organising a conference bringing over experts from America, Norway, you name it, we have had them in Northern Ireland.
Presenter William Crawley
Just to persuade them that this is a real thing that they need to take seriously.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Appearing at the conference is Norman William and collapsing in your bed for maybe three months after it. There's not another disease that a patient has to educate the caregiver. So we're very focused on that, and there was attempts here in Northern Ireland to set up a clinic twice.
Presenter William Crawley
There was a Part Time clinic at one point wasn't there.
Joan McParland, Hope 4 ME & Fibro Northern Ireland
Oh, that never happened. It never happened. There was two attempts by the Health and Social Care Board to setup, to recruit an ME consultant and to set up a clinic although part time, we were told it was the service it would grow. Now we enlisted the help of the Patient Planning Council in 2013. It's 2022 and we are not one step further on.
Presenter William Crawley
So that is the importance of this conversation. We're talking to Doctor Charles Shepard and John McParland. I'll bring other guests in in a second. But lots of you, lots of you are getting in touch with your experiences of this and indeed of long COVID and the symptoms that are very similar. Hoping that, for example, the focus on long COVID conditions might actually have an overlapping benefit for ME in that by taking that seriously, we'll finally get around to taking me more seriously. Some of you are hoping that will happen.
[Patient Experiences]
Presenter William Crawley
People are messaging in, what about the new service post Covid syndrome service it’s been set up in Northern Ireland and in other places. Again, there is some hope amongst people with ME that some of the learnings there, some of the treatments, some of the therapies might actually have a transferable impact for them.
Doctor Eddie Murphy is on the line from University College Dublin. A clinical psychologist, Eddie welcome good afternoon.
Dr Eddie Murphy, Clinical Psychologist from University College Dublin
Good afternoon, William and to Joa and Doctor Charles. I think it's important to for me, just say that you can hear it, that the individuals with ME have experienced incredible prejudice and disbelief and being stigmatised when it comes to true family, friends and health care professionals and in the context of their illness.
Dr Eddie Murphy, Clinical Psychologist from University College Dublin
I think it's important also to say that while cognitive behavioural therapy (CBT) or psychological based therapies, it has a role in the management of the symptoms, and improving the functioning and there's a stress. But in of itself, the whole area of graded exercise, fixed incremental increase in exercise is not appropriate, and I think it's really welcomed the new guidelines from the NICE guidelines that are talking about energy management. It needs a more compassionate way that the guidelines have been structured to which is very individualised, and it talks about the management and supporting individuals through their specialist teams.
Presenter William Crawley
So, in the past people were just given these graded exercise therapies where you'd say they essentially let's get you walking more a little bit every time incrementally, and you kind of walk your way to some kind of solution.
Dr Eddie Murphy, Clinical Psychologist from University College Dublin
Well, we might be that simple but graded exercise was one of the features of it really, and now it's more around energy management and with any chronic condition, whether it's chronic fatigue or it's around energy management. Generally speaking, what happens is when people are feeling really well, they might have a good day, they overdo it and then they pay for that. I'm sure Joan will say that and it's really about how do you do it within limits and I actually do that at an individual.
Dr Eddie Murphy, Clinical Psychologist from University College Dublin
The impact, the psychological impact is significant for ME because it impacts in your life your activity, your engagement in relationships, your social education of its children and adults. So, it does impact.
Presenter William Crawley
Well, there's Julian there, texting me, whoever Julian is saying. This is a yuppie disease. Well I mean, Julian. Thank you for voicing up that.
Dr Eddie Murphy, Clinical Psychologist from University College Dublin
Just a myth
Presenter William Crawley
Thank you but I'm grateful for Julian, you know, for saying, well, a lot of people out there who have been pushing the stigma are actually thinking at times because that is the myth, isn't it?
Dr Eddie Murphy, Clinical Psychologist from University College Dublin
It's a physical illness. It's not a psychological illness. I'd like to give Joan look maybe more to space to talk if she's waited 20 years to talk
Presenter William Crawley
We've only got a minute and a half. I want to give Joan and Charles a final word because the focus, Joan is, we've got a sense of it, we're making progress. We've got some NICE guidelines. Covid may have actually helped in a sense, in that there's some new focus on this. We need a referral service now don't we?
Joan McParland, Hope for ME & Fibro Northern Ireland
Yes, twice the Health and Social Care Board have attempted to set up an ME clinic in Northern Ireland and twice good candidates have applied, twice this new clinic and ME specialist never materialised because HSCB couldn't deliver.
Presenter William Crawley
Will the post Covid syndrome services do the job?
Joan McParland, Hope for ME & Fibro Northern Ireland
No, no, no and ME clinician led.
Presenter William Crawley
It needs to be specifically on that
Joan McParland, Hope for ME & Fibro Northern Ireland
It was specifically what it was for 2018.
Presenter William Crawley
No, I'm talking about where we are now, Charles. Do you think the post Covid syndrome services could have an overlapping usefulness here?
Dr Shepherd, MEA Honorary Medical Adviser
They’ve got an overlap because there is this terrific overlap between some of the symptoms of long Covid and the post viral symptoms of ME. So, it should be a two way process. We got an awful lot of help and information we can provide to the long Covid community from what we've learned about the management of these symptoms. But at the same time, there's all this, but research money services going into long Covid and I'm sure the ME community are going to benefit from that.
Presenter William Crawley
Guys, thank you all so much. It's been a learning experience for me and for all of us. We need to do it again. We need to talk more about this. So many have been in touch with us, but thanks to all of you, that's it from us.