We recently featured local radio coverage of M.E. in Norfolk and Suffolk, and on Monday, 21 August, it was Sussex and Surrey's turn. And unlike the situation reported in Norfolk and Great Yarmouth – where attempts to get good NHS provision for ME/CFS have been ongoing for more than seven years – the situation in Sussex at least seems better.
Following an interview with Martine McCutcheon, it was Colin Barton (pictured below) who was brought in to help explain what M.E. is, how he has coped with the condition for over thirty years and how things have improved for people in Sussex.
Colin is chair of Sussex and Kent M.E. Society, and this year they celebrate their 30th anniversary. You can read the many tributes paid to the charity on its website, including from ME Association chairman, Neil Riley, and patron and MP, Caroline Lucas, who commented:
“As a patron of the Sussex & Kent ME/CFS Society, I am delighted to be able to join you in marking the organisation’s anniversary.”
“With over 12,000 adults and children affected by Myalgic Encephalopathy/Chronic Fatigue Syndrome in Kent and Sussex, and around 3,000 of these thought to be virtually house-bound, the Society’s work has never been more necessary.”
“Through providing key services, information and generating new strength… the organisation continues to play a crucial role in the lives of patients across the region. And in this, your 100th newsletter, I wish you all the best for what I’m sure will be a very successful future.”
You can access the iplayer recording of the Danny Pike show, broadcast on Monday 21 August, 2017, by clicking the link above – for as long as the recording is available. What follows is a transcript of those parts that relate to M.E.
Transcript by Russell Fleming, Content Manager, ME Association. All errors, omissions, and some slight edits, are my own. firstname.lastname@example.org. uk
Danny: Now, on my Saturday show this weekend… was actor and singer, Martine McCutcheon (pictured), who lives in Surrey at Hampton Court – she was talking about her new album, ‘Lost and Found' – but also she was talking to me about living with M.E. or chronic fatigue syndrome. So, I thought we'd spend some time this morning talking about that – what it is – and perhaps demystifying it a bit, because I think perhaps it is a bit misunderstood. So, here's just a little bit of me at the weekend, talking about M.E. and also her new record, ‘Lost and Found', with Martine McCutcheon.
Martine: ‘It's absolutely amazing. It's so good to be back, doing what I love and I am so, so, proud of this album because it comes from such an honest place. It wasn't written to be a hit album. We didn't even know it would be an album – it was just songs I'd written during a very difficult time in my life and I'm just so glad people love it and the reviews have been so good.
Martine: ‘It's kind of about the fact that I lost myself, and found myself again – over an eight-year period. I was diagnosed with M.E. and Lyme's Disease and was trying to have a baby and couldn't; and it was a really dark, difficult time. And then I got myself better over a period of time, and got inspired again, and the whole journey – of the good and the bad – is on the album.
Danny: You mentioned earlier the illness you had been through, and I wonder whether your fame – your profile – makes it more difficult to cope with, you probably just want to shut yourself away but people still expect things of you. How difficult was it going through your M.E. with your profile?
Martine: ‘Yeah, it was a lesson I really needed to learn, and an obstacle I had to overcome. I had to start by realising I couldn't always put on a brave face, I couldn't always be what the public wanted me to be. And sometimes it was OK to be in the petrol garage or on the street, not feeling one hundred per cent, and not giving everybody what they wanted. It was a valuable lesson and I think that nothing else could have stopped me really – I don't think anything else would have made me take stock and just enjoy the simple things in life, and ‘smell the roses'.
Martine: ‘I had to have quite a harsh lesson I think to come at life from a healthier angle, because I was ‘all-or-nothing', I was constantly in ‘fight-or-flight-mode', I was constantly running on adrenaline; and it's no way to live long-term. That's why people burn-out. And a lot of people with M.E., a lot of them are sport's stars or big politicians – people that constantly push, push, push. And I think, in a way, being in the public-eye, it was a bigger bump when I fell – don't get me wrong – and it was a more difficult journey for me to get better, but I think it actually gave me the lesson I really, really needed. Which is that what I think – my opinion of me – must come first.
Danny: That's Martine McCutcheon speaking to me earlier. Congratulations to her by the way, top 20 for her new album ‘Lost and Found', when the charts came out on Friday. But what exactly is M.E.? And perhaps it is quite misunderstood by those of us that don't have it. In the studio now is Colin Barton who is chairman of the Sussex and Kent M.E. Society and lives with the condition.
What is M.E.?
Danny: What is M.E.?
Colin: Well, M.E. is a neurological condition that can come on sometimes after a viral infection or a trauma, and this would manifest itself in physical and mental debility, and any type of stress would affect it as well and so people can't sort of function physically or mentally for any useful period of time. With some people it's quite severe – with a few it can lead to being bedbound for a long time.
Danny: Martine was suggesting at the end there that people who were functioning at quite a high level in terms of sport's stars and people with a high profile – would it disproportionately affect them or can it hit anybody?
Colin: Well it can hit anybody, definitely. It's likely to show up more with people who are particularly active and professional and such-like and high-achievers – it obviously shows up more then with more active people; but in actual fact it does affect people of all types.
Danny: And how long have you been living with M.E.?
Colin: I have been living with M.E. for over thirty years now, because it did take a long time to diagnose and it was in the dark old days when it wasn't recognised as easily.
How does it affect you and what of those who don't understand it?
Danny: And how does it affect you?
Colin: Well affects as far as physically and mentally, I can't function for any useful period of time and I also have to avoid stress and such-like. So, you have aches and pains, and stomach problems as well can come into it, and also eyesight difficulty.
Danny: So has it affected all areas of your life would you say?
Colin: Oh definitely. I've been unable to function really for the last thirty years. I used to be a successful hotelier at one time, until I came down with a severe form of glandular fever. And that – as well as some stress that was being created by having the roof put on in the hotel – I found myself bedbound for nearly three months.
Danny: Tell me about people and their misunderstanding of this condition, because we can't see it, what sort of things would people say to you or to others who have M.E.?
Colin: I suppose some people do find it difficult to understand, people would say, ‘Oh you get a bit tired', and this type of thing, and this can be quite hurtful to a number of people with M.E. – it doesn't bother me too much and hasn't really, I just sort of get on with it. And also, some of the symptoms – if you're sort of mildly or moderately affected – these things become part of your life and so it's part of you. Even though you can't really function one hundred per cent in society, you can sometimes function reasonably well.
Danny: So you're left somewhere between being really, really ill and being perfectly well, and you can't shift yourself out of that?
Colin: Well that is certainly a problem. When one gets to a stage where one is sort of mildly affected, and you're not either very sick or non-sick shall we say, and that can be a bit difficult actually.
Have things improved for people with M.E. in thirty years?
Danny: And so you've been living with this for thirty years Colin. Is diagnosis better and is there more effective treatment these days?
Colin: Oh things are a lot better than they were thirty years ago. I mean locally, in Sussex, we've got a specialist NHS centre, and that's been going since 2005 – and which we helped set up – and has dealt with over five thousand referrals from all over Sussex. And they're quite successful. They've got a good team there.
Danny: And there was no need in our conversation with Martine for her to talk about her condition, but her being open and willing to talk about it publicly like that, is that useful?
Colin: Oh definitely it is. We do need more high-profile people to speak out – but it does take a while. And also with some people once they've had the illness and they've been very severe with it, once they come out of it – which a great number of people do – then of course they don't want to be hanging around (if you see what I mean). They want to carry on with their lives and be active again… etc. etc.
Sussex and Kent M.E. Society
Danny: And what do you do in the Sussex and Kent ME/CFS Society? How do you help people?
Colin: Well, we do quite a lot actually. We have newsletters that come out quarterly, we've got twenty telephone helplines, we've got e-groups, website, hold meetings, medical conferences, etc.
Danny: And I suppose that can help people feel less isolated and think ‘Oh I am the only person with this', if you are talking to other people who know what you're going through. Because if you are having misunderstanding from other people, and saying you're making excuses, and things like that – really hurtful things – talking to people who actually know, is probably a good thing?
Colin: Oh yeah, definitely, yes. They pick up a lot of information from each other and support etc. and you know our area is quite well covered for that type of thing, but it does also mean there are a lot of very seriously ill people around and I wouldn't like to forget that.
Danny: OK. Colin, thank you for talking to us this morning. Nice to meet you. Thank you. Colin Barton there, chairman of the Sussex and Kent M.E. Society, and here's a telephone number for you if you would like to get in contact with them: 01273 674828. They are online as well at measussex.org.uk
Danny: And if you have M.E. or are perhaps still living with it, then call me: 08495 70057 Do people misunderstand your condition?
Danny: Earlier in the programme, we were attempting to demystify M.E. or chronic fatigue syndrome, because it came up in my conversation with actress and singer, Martine McCutcheon, who lives in Surrey, when she came on the programme on Saturday. Tokie in Brighton, good morning:
Tokie: Hi there, good morning
Worst flu ever – every day of your life…
Danny: You have M.E. Tell me what that's like?
Tokie: Oh it's become part of my life now as you were saying on air earlier, but it's kind of if you're having the worst flu you've ever had, every day of your life. That's the only way I can describe it really.
Danny: OK, so if we can kind of imagine that feeling – or being drained, of feeling washed-out – for years… How long have you had it now?
Tokie: I've had it since I was sixteen and I'm nineteen now – it's been about two and a half years, so…
Tokie: I had glandular fever. I was hospitalised with glandular fever over Christmas one year, and was left with it after that.
Danny: And that seems not uncommon, from what I have been hearing today.
Tokie: Yeah, a lot of the people I have spoken to – because I am in a lot of M.E. support groups and things like that – and a lot of the people I've spoken to, it started with glandular fever.
Danny: Do people misunderstand your condition?
Tokie: Oh entirely. I mean I've had tutors at college, I've had friends and family, even doctors misunderstand it. They've got these preconceptions about it that they can't let go of and, yeah…
How does it make you feel…
Danny: So help us. Explain to me how it makes you feel on a day-to-day basis and your ability to study and whatever it is that you're doing.
Tokie: Well, I've just got accepted into university but I'm having to do my first year from home to get enough credits to actually go to a university because I had to leave college – I didn't get any A-Levels – because I just couldn't focus, I couldn't stay awake.
Tokie: I was going into college and going home early everyday because I was getting sick in between lessons. As well as the physical there's a mental side to it, where you get what we call ‘brain-fog', where I can't put words together, I can't read properly – it's really, really bad some days.
Danny: It sounds miserable. I bet it's easy for people to dismiss it and say, ‘pull yourself together' or, ‘put yourself in gear…'.
Tokie: Oh, Oh, definitely. And I think that's why a lot of us prefer calling it M.E. now because when it's referred to as chronic-fatigue, what does that literally translate to? Just being very tired. And a lot of people say, ‘Oh yeah, I understand, I'm always tired'.
Danny: So it's pretty unhelpful other people judging you?
Tokie: Yeah. Definitely.
Danny: What treatment are you able to have, if any?
Tokie: At the moment I am just taking painkillers and vitamin supplements, and things like that to try and help myself get through the day, but it's really difficult with what was being said earlier, it's so difficult to diagnose. I got diagnosed by one doctor and had the diagnosis retracted by another one! And no treatment offered.
Danny: I am always wary about passing on tips and tricks, from others, but an emailer from Worthing, Denise, said earlier in her note that her daughter had M.E. from the time she was eleven, eventually had something called ‘The Lightning Process'.
Tokie: Yeah. I personally don't think… The Lightning Process is sort of a way to change the way you react to things, and the way you view things, so that when you are getting sick – at least from my understanding of what I have heard of it – when you are getting sick, when you are in a flare-up, it's knowing how to deal with that, knowing how to lessen that. But I feel like if you have severe M.E. it's always going to be there, you're always going to get these flare-ups and knowing how to deal with them, knowing how to make them a little bit better when it happens, is a great thing – but I feel that it's not going to be a cure for M.E. If that makes sense?
Danny: It does. And Denise said it has made a contribution to her daughter. OK. So, listen, thank you for giving us a further insight Tokie. Take care. And I hope you get better sooner rather than later. That's all I can offer you really.
Tokie: Thank you very much.
Danny: OK. But also if you have helped the understanding of this condition, you have helped others. Thank you for that.
You can listen to the broadcast for as long as it is available on iplayer: here.
The Lightning Process
The ME Association is not aware of any independent clinical trials to assess the efficacy of The Lightning Process. There is anecdotal evidence that some people diagnosed as having M.E./chronic fatigue syndrome have improved but others who have attended the training course have reported that either they felt no improvement or relapsed. As in all such unproven treatments, the ME Association makes no recommendation and advises patients to make their own enquiries and discuss possible treatments with their medical adviser.