This was the breakfast show broadcast on BBC Radio Norfolk which ran for well over three hours. M.E. was featured throughout the programme with local group M.E. Support Norfolk and their unstinting campaign providing the focus.
Their efforts may finally have begun to bear fruit, but the current recommendation from NICE to not update or change its clinical guideline has not helped.
Barbara Robinson (pictured) is the group's representative and is interviewed at length on BBC Radio Norfolk (and BBC Radio Suffolk).
However, I think it's worth reading all that was said on Norfolk radio about M.E. and the struggle to get local acceptance of the disease and the battle for a suitable healthcare provision.
I hope to write more about the epic battle between M.E. sufferers and local clinical commissioning groups in Norfolk and Suffolk, in a future ME Association blog.
Dr Luis Nacal and Dr Eliana Lacerda from the UK ME/CFS Biobank team – the infrastructure project funded by the ME Association – provided a feasibility report and recommendations to the Norfolk and Suffolk clinical commissioners in 2016. It is hoped that this document will form the basis of new provision for ME/CFS in the area and we should hear more when commissioners meet in October.
BBC Radio Norfolk with Nick Conrad, broadcast, Tuesday, 15 August, 2017
Transcript by Russell Fleming, Content Manager, ME Association.
All errors, omissions, and some slight edits, are my own.
Nick: A campaigner from Norfolk says people with a debilitating condition are being let down by the organisation which tells the NHS which treatments to use. Barbara Robinson is from ME Support Norfolk. She has a relative who suffers from chronic fatigue syndrome, or M.E., which causes a range of problems with the most common being extreme tiredness.
NICE is not working for sufferers…
Nick: She says that NICE, which sets the clinical guidelines, isn't doing anything to see if new treatments could work for sufferers.
Barbara: ‘Unfortunately, the guidelines suggest there should be no testing, no further investigations of these other complex symptoms, and that renders people with no hope of getting to the bottom of their difficulties, resolving them, or improving on them.'
Nick: We'll hear more from my interview with Barbara later in the programme, but first, what is it like to actually live with M.E.? If you do have experience of this, pick up the phone this morning and tell me.
Living with M.E.
Nick: Tracey Gwint from Taverham, near Norwich, is 51. She was diagnosed with M.E. when she was 18 years old and it has dominated her life since then. Tracey has been telling her story to our reporter Clare Worthing.
Tracey: ‘Thirty-three years ago, I got glandular fever and I was really ill for a long time, and after that I kept being ill. I couldn't go through a day without coming home and going to sleep, and I'd get virus after virus. And then I got shingles a few times and that wore me down as well. And it's just gone from there really.'
Clare Worthing: ‘And what are the treatment options? How are you cared for?'
Tracey: ‘It's self-management but there is support out there, within the national health, there is the M.E. side of it is quite good. I have medication as well to help with the muscle-pain, and also to help with the tiredness-side of things and the fatigue. So, yeah, that's the kind of support I get. Also… I've gone dead, sorry.'
Clare: ‘No, no. That's fine. Is that what you mean by the ‘brain-fog'? You find it quite hard to get the list of things you want to say?'
Tracey: ‘Yeah. It just, just gets in a muddle.'
Clare: ‘So, if someone goes to a GP and gets this diagnosis, there isn't a medicine you are given that can help necessarily with the condition generally?'
Tracey: ‘No. No, there isn't any medicine that says, ‘Here's the pill for this. Take it and it will take the pain away and you'll be able to have a good day.'
Son has become her carer…
Clare: ‘Obviously this is a hugely debilitating condition. I imagine it has had a big impact on your family, having to support you with this condition – become your carers?'
Tracey: ‘Yeah. Yeah it has. It's been hard. My son hasn't been able to have a normal family life. It's difficult when his Mum can't take him somewhere he wants to go because of her meds, or because she can't drive, or really anything.'
Tina: ‘So socially, for him, he's also had to become my carer, which means that he's had to take on responsibilities for things that any child shouldn't really have to take on responsibility for.'
Clare: ‘What can people like me do to be supportive with someone who has the condition? I imagine many people won't have met anyone with M.E. and might not recognise if someone has it, and not really know what to do and how to help.'
Tracey: ‘It's hard to tell people. And they also look at you sometimes and they can't tell you're in pain. They can't tell you're in so much pain and you're so tired. Because on the outside you look so good. But it would be nice to just have the confidence to say to people, ‘I've got M.E. and I need help', because sometimes it's just a mixed reception out there – it's difficult.'
New research from America…
Clare: ‘Part of the reason we're interested in talking about M.E. at the moment is the research that has been done in America about new treatments, and some new options have been recommended, but the body that makes these decisions in the UK – that's NICE – has said, ‘We're not actually going to look again at these. We're happy with the way people are being treated now.' What are your views on that? Is that frustrating?'
Tracey: ‘I think for a lot of people, we look, we try and explain it and tell people what it is, but to have that recognised in America and I think Canada as well, but for us now to recognise it – and to label us with something that they don't understand – is frustrating. I just wish that someone out there would just look into it more and really understand it.'
Nick: That's Tracey Gwint from Taverham. NICE, which sets the guidelines on the treatments given by the NHS, sent us the following statement. It said that there had been no new evidence to suggest that it should change its mind on how M.E. is treated. But it also said that it had been consulting on its rules and will make a final decision later this year.
Nick: Now, I would like to speak to you this morning about M.E. There's a lot of people who, in the past, have doubted the condition even exists, and of course you can imagine – for those that suffer from it – they find that deeply offensive.
Nick: There has been of late quite a row-back on that school of thought, to recognition and also respect for the [condition] and the effect it has on those whose lives are limited because of M.E. – and a change in attitude has started across the healthcare profession.
Changing attitudes or persisting stigma…
Nick: That said, it takes time for everyone to get on board with the new way of thinking about the condition, so I'd like to talk about that as well. I am going to totally distance myself from these remarks – so please don't think they are my thoughts – but in the past, rather offensively, people have said, ‘Is it M.E. or is it, me, me, me, me?', which, as you can imagine, is a highly contentious, highly controversial and deeply offensive to those who are suffering from M.E.
Nick: But because of that stigma around the condition, there is a feeling that those with M.E. haven't had the respect that they deserve, are not listened to, and not just by the public but the professionals as well at times, have been accused by some, of not taking the condition seriously enough – or even believing the condition exists.
Nick: I am just going to reiterate – they are not my views but that is what, in the past, some people have said that their experience of having M.E. and dealing with healthcare professionals has been.
Nick: So tell me, this morning, how hard is it to live with M.E. 01603 617321. If you are picking up the phone this morning, are you finally getting the recognition you deserve? Let's talk about M.E. We don't talk about it enough. Let's talk about M.E. on the programme this morning. So, if you live with M.E. I'd like to have you on the show. 01603 617321 if you are picking up the phone this morning.
Nick: We've been talking about M.E. this morning, and the lack of services available to people who are suffering with M.E. We're after your experiences. Alison, good morning…
Nick: Alison, ‘Good morning, Nick.'
Alison: ‘Thank you for calling the programme. So, for those who doubt M.E. or for those who don't know what M.E. is, what is M.E. and how does it affect your life?'
Alison: ‘M.E. is a very debilitating illness. You get lots of muscle pain. Very fatiguing. People do doubt it but it's very, very, real for sufferers. Sometimes it's incredibly difficult to drag yourself out of bed in the morning, you can be driving along and just be desperate to go to sleep, you can be sitting at your workplace and just be overwhelmed with this sense of just needing to sleep. Huge pain. Tingling in your arms and legs. Cramps. Lots of tingling, lots of throbbing. Pain. The pain is incredible. And fatigue. Chronic fatigue. It's incredibly debilitating.'
Nick: How hard is it to just get on with life, to hold down a job, to be a member of the family with responsibility? I guess it must be very tough…
It's not going to beat me…
Alison: ‘It's incredibly tough but you have to find ways to cope. I think the biggest thing is mental… overcoming it mentally. That's the thing I found the way to cope.'
Alison: ‘It's not going to beat me. I've got to be tough mentally and not let it get to me. You do find ways of coping. I've had to find ways of coping. But this thing is not going to beat me.'
Alison: ‘I'm clenching my fists as I'm talking to you – it is not going to beat me. The thing that got to me – years and years and years ago – I went to an M.E. centre and saw other people sitting in wheelchairs and at the time I was in my twenties, and I thought, ‘I'm not going to be like this'. It's not going to get me. It's not going to beat me.'
Alison: ‘I'm going to find a way of living a life – whatever that life is, I'm going to live it to the best of my ability and find a way of coping. And that's hopefully what I've done.'
Alison: ‘But I find I can't tell people I've got it because they look at you like you've got three-heads. And when you drive round the supermarket and you see the disabled parking spaces, and you can't go in them – because you haven't got a disabled badge – but you just desperately want to because you think, ‘How am I going to walk round a supermarket when I feel like death-warmed-up and can barely drag one foot in front of the other? But you have to park in a normal space.'
Tiredness, that no sleep will get rid of – and pain, no pain-killer will touch…
Nick: What about fighting that stigma? That must be very difficult. When people… You say you've got M.E. and people look at you as if the condition doesn't exist. A lot of people don't believe this condition exists…
Alison: ‘You don't look like you've got anything wrong with you. It's all a feeling – if you like. People can't see your muscles in spasm, they can't see that you're in absolute, terrible pain all the time.'
Alison, ‘You know, people at work – the youngsters after a night on the town – they feel terrible, they feel tired; but they don't know they're born. They don't know what pain is – day after day after day. And the tiredness that comes, not only with the fatigue that you've got with the M.E. but the tiredness from being in constant pain all the time – tiredness, that no sleep will get rid of and pain, that no pain-killer will touch.'
Alison, ‘And the debilitation that comes with that constant pain and that constant fatigue, you can't see it. Even my own in-laws did not believe that I'd got something like that. I took them some M.E. leaflets and they started to come round and they could see what it was like for me…'
Nick: Alison forgive me, I've got to leave it there. Thank you so much for coming through this morning and I wish you all the best. I'm sorry for bouncing on to the next caller so quickly because I'd like to hear more about what you've got to say, but gosh I do wish you all the best. Thank you for coming through.
Nick: Tina is in Stowmarket. Good morning Tina.
Tina: ‘Good morning.'
Nick: Good morning. What would you like to say?
Even worse for children…
Tina: ‘I think it is even worse for children because everybody expects children to not want to go to school, or anything like that, and unless you've actually been through the fatigue in your muscles, in your joints, and the stomach cramps – because once you've overexerted yourself they've found you get an infection within your gut, that then transfers to the brain so that's where the brain-fog comes.
Tina: ‘My son was eight when he was first diagnosed…'
Nick: And he was actually diagnosed with M.E. was he?
Tina: ‘Well, with chronic fatigue. Well, they actually put down, ‘chronic fatigue inflammation disorder', which means that its all in the mind. Now as a parent, I trusted the doctors and thought ‘OK, fine. It's just a matter of telling him his body is going to recover – and just recover', which we all do, don't we?'
Nick: And where… Sorry for being very brief this morning… Where is he now?
Housebound after CBT and GET…
Tina: ‘He's at home. He's housebound. He was housebound for quite a while after they gave him CBT and Graded Exercise Therapy…'
Nick: Tina I am really sorry. I am really sorry to people for having to whizz them through their stories. I really do apologise for that. I've just got so many things to get into the show this morning…
Tina: ‘I appreciate that.'
Nick: Thank you for coming through this morning. I promise you I will do more on this. We'll take more calls and I will try and give you the time you deserve. And do call back in when I do that Tina, because I feel bad for rushing you through your narrative this morning. All the best to your son.
Nick: 01603 617321 if you are joining us. 7.54am.
Should new treatments be made available?
Nick: I want to go back to our story about M.E. Lots of you talking about this and clearly feel very strongly about it. People suffering from the debilitating condition says its time to look at whether new treatments should be made available. I'm talking about chronic fatigue syndrome or M.E., it causes a range of problems with the main symptom being extreme tiredness.
Earlier in the programme we heard from Tracy Gwint from Taverham. She's suffered for over thirty years. She was diagnosed when she was just eighteen years old. ‘It is frustrating. I would just like to wish that somebody out there would, would, look into it more and really understand it.'
Nick: Campaigners say they want NICE, which sets guidelines on the treatments given by the NHS, to look at evidence that new treatments could help sufferers. One of those campaigners is Barbara Robinson from the group, ME Support Norfolk. She's been telling more more about the effects of M.E.
Barbara: ‘It's very complicated and can be a profoundly disabling condition, that can be quite mild, or moderate, or it can be very severe. Unfortunately, about a third of patients are so severe they are effectively housebound – some bedbound – for many years.'
Barbara: ‘It's a long-term condition, lasting fifteen to twenty year or more with little hope sometimes of recovery. The most severe are in receipt, effectively, of no proper services at all. Not from the NHS, and certainly no local services.'
Nick: What are the treatments at the moment that are on offer?
No testing and no further investigations…
Barbara: ‘Unfortunately, there is no single or collective treatment. There is only management. This means that people may have more than just M.E. – they may have other conditions as well – something called comorbidities, but the guidelines say there should be no testing and no further investigations of these complex symptoms and this renders people with no hope of getting to the bottom of their difficulties and resolving or improving on them.'
Nick: NICE, the body which approves treatments for the NHS, says it won't review the treatments for M.E. Now I know that decision is very disappointing for you, do you think there's a problem with the acceptance of M.E. as a condition, and that there's still a lot of people who actually doubt it?
NICE guideline has been misinterpreted…
Barbara: ‘Undoubtedly, that's a problem. We know from all sorts of research that about 40% of medical professionals including GPs don't understand and don't realise how severe this is and don't recognise its true form.
Barbara: ‘There's lots of confusion between people who have fatigue, from other reasons – other conditions – that get put together here; and the long and the short of it is that people are not being properly diagnosed, are not properly checked, therefore even management is inappropriate.'
Barbara: ‘And NICE over the last decade has done an enormous amount of damage, because the guideline has been misinterpreted and if you look back, what they recommended isn't being followed. And yet many doctors will say that they understand it and they know about it, and they are delivering what people like NICE are saying is the way forward – but that is not the case.'
Nick: Norfolk CCG (clinical commissioning group) are meeting to discuss the way that they look at M.E. in the coming weeks. What would you like to happen? What would you like to be the outcome of that meeting?
Norfolk CCGs refuse to make M.E. a priority, but Suffolk has been brilliant…
Barbara: ‘Well, in fact there are four clinical commissioning groups in Norfolk and there's one in Great Yarmouth and Waveney that covers part of Norfolk. Unfortunately, over the years, they have refused to make this a priority. It is not on their five-year forward plan. It is not discussed in public.
‘Suffolk has been brilliant. They've got it on their forward planning. They are taking the lead. They are going to coordinate a meeting between all seven CCGs to take this forward and Suffolk has put forward a solution that we are hoping the others will take seriously.'
Barbara: ‘But unfortunately, some of the CCGs in Norfolk and in Great Yarmouth and Waveney in particular, have said in public to a health watchdog that M.E. is not a priority for them. And they refuse to allow this to be discussed at governing-body level in public. We feel thwarted in making a case to them, to demonstrate just what a huge health inequality this is and what risks there are for the severely affected in Norfolk and Suffolk.'
Nick: Why the difference in Norfolk and Suffolk?
Virtually no support for those severely affected in Norfolk or in Suffolk
Barbara: ‘Because of the changes in the health service. I did an interview in 2009, here, as did Great Yarmouth and Waveney's commissioning representative, and at that time we were on the cusp – having had the health overview and scrutiny – of delivering a service that met local needs and as supported by patients.
Barbara: ‘But the changes in the health service put delays in the programme, and we are no further forward than we were in 2009 in many respects.'
Barbara: ‘We have a worse situation – a reducing service – virtually no support for people who are severely affected in their own homes across Norfolk or Suffolk, and we have a refusal by Norfolk CCGs and Great Yarmouth CCG to talk about this in public and make it an important item.'
Nick: That was Barbara from M.E. Support Norfolk talking to me there. NICE who sets the guidelines for treatment given by the NHS sent us a statement, they say, there's no new evidence to change its mind on how M.E. is treated, but it also said it had been consulting on its rules and would make a final decision later this year. M
Nick: Meanwhile the clinical commissioning groups in Norfolk also sent a statement. They say they are working with local patients and groups to improve services for people with M.E. or chronic fatigue syndrome.
Nick: Gosh. Quite a reaction to this by the way on the phones and on text. 01603 617321 if you want to join us this morning and talk about M.E. and what its like living with the condition.
BBC Radio Norfolk News
North Korea, Trump, Child seat-belts, Brexit, Campaigners for people with M.E. or chronic fatigue syndrome… wait, what?
‘Campaigners for people with M.E. and chronic fatigue syndrome say their treatment in Norfolk is a scandal. In both Norfolk and [Great Yarmouth and Waveney] they say that clinical commissioning groups aren't making the conditions enough of a priority.'
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BBC Radio Suffolk
The situation relating to NICE and local provisioning of NHS specialist services for people with ME/CFS was also featured by BBC Radio Suffolk on Tuesday.
Barbara Robinson from M.E. Support Norfolk was again interviewed, this time on the Mark Murphy show, and this was how it went on that occasion.
Transcript by Russell Fleming, Content Manager, ME Association.
All errors, omissions, and some slight edits, are my own.
I have only taken pertinent extracts from the Suffolk broadcast.
Mark Murphy: 7.26am and this morning here on Mark Murphy at breakfast, we're going to hear from campaigners and families who say that people here in our region with a debilitating condition are being let down by the National Health Service and also by the organisation that advises it on which treatments to use.
Mark: Symptoms of M.E. include extreme physical and mental fatigue, painful limbs. The condition is also called chronic fatigue syndrome. It can affect memory, concentration and digestion as well. Those with severe M.E. can be confined to a bedroom for years hardly able to move.
Mark: Jane is eighteen and lives in the Southwold area. She was a normal teenager who loved to cycle, swim and play the guitar but at fourteen, she became ill overnight. Jane doesn't want us to use her real name, or her voice, so Jane's words are spoken by an actor. She and her mother say the illness has been devastating.
Jane (actor): ‘There aren't words to put it into… My body is uncomfortable and I am always hot and always in such pain. I am always exhausted and always feel sick. Just being in the world, feels like I am being attacked by things – smells and sounds. It's just not… It's just not a nice way to exist.'
Jane's Mum: ‘So she's always in pain. If you touch her it's like a burning, agonising feeling for her. So we can't touch her, can't give her a hug. So she's crying with pain – you can't hug her. So, imagine what that's like – as a parent not being able to hug your child. She can be sick – amazingly – up to fifty times a day.
Jane's Mum: ‘A diagnostic test for M.E. would be fantastic, it would be like the Holy Grail. Because at the moment it's a diagnosis of exclusion – so you don't have all the other illnesses, therefore you must have M.E. which is a bit of a negative way of putting it and so I do think people rather get lumped into it.'
Mark: We'll hear more from Jane and her Mum later in the show after eight today. Barbara Robinson is from [M.E. Support Norfolk], and is in charge of their Suffolk youth and support group. She has a relative who suffers from chronic fatigue syndrome, or M.E., which causes a range of problems. She says that NICE, which sets the NHS guidelines, isn't doing anything to see if new treatments could work for sufferers.
Barbara: ‘Well, I have two family members that have this diagnosis – one diagnosed in 1998 and the other in 2006 – so I've got twenty years of more personal and professional experience because I work with young people that have this condition as well.'
Mark: It has been around and recognised for some time now, yet some people still don't actually believe it exists. That the person is just being lazy, and just can't be bothered to do anything. What do you say to those people?
Severely affected just don't exist as far as NHS is concerned
Barbara: ‘This has been recognised time and time again, since the fifties and sixties, but the World Health Organisation by the British Medical Association, but unfortunately myths are perpetuated which suggest that anyone with a bit of fatigue has got M.E. and they are conflating sheep and goats.
Barbara: If they were to separate people into fatigue for other reasons – other conditions – and focus on this critically damaging and devastating condition, then we would make some progress. There are far more people with M.E. than with M.S. And it often presents in a much more serious form long-term than M.S. And yet the most severely affected are getting effectively nothing – they just don't exist as far as the NHS goes.
Mark: The symptoms and what it can lead to – what have been your experience of that? What have you seen?
Barbara: ‘I have seen young people and children as well as adults having to be cared for in nursing-homes, having to be tube-fed, bedbound, in agony, with no quality of life and with no prospects for improvement in their situation. Because tests and investigations just don't seem to be offered to get to the bottom of things that could be alleviated when you have this label of M.E.'
Mark: Like what? What things could be tested for to help the symptoms?
Barbara: ‘Well the whole population is suffering through changes in food supply, and diet and lifestyle and that's led to very simple things that we've discussed before, like deficiencies which are cheap and easy to test and if they are addressed they will improve how people feel.'
Barbara: ‘Added to that you've got pain, and sleep difficulties, and all these specific symptoms that cause huge problems could be looked at if the person was given ongoing care and support, tests and investigations to begin to build towards a better situation and better health.'
Mark: So simple tests like a vitamin D deficiency then? That would be a step forward for people if they are suffering those symptoms you are saying. I mean it could be something as simple as a vitamin D deficiency couldn't it?
NICE management totally inappropriate
Barbara: ‘It certainly could, however unfortunately the NICE guidance suggests that further investigations and further tests – very simple, straightforward things – are not appropriate and all that we can do is not treat but just manage. And the management that they offer is totally inappropriate for severely affected bedbound people who represent thirty per cent of this population.'
Mark: So you want NICE and the Government to be looking at this and saying, right OK we are going to get to the bottom of this, we are going to try and find out what is wrong with these individuals? Rather than just help them cope?
Barbara: ‘Absolutely. And in 2014 the director for the clinical guideline from NICE, Professor Mark Baker, said the existing guideline is not fit for purpose. Yet three years on they are refusing to even discuss this in a sensible way and move things forwards. The science is there. The evidence base is there. They are refusing to even look at it let alone discuss it.'
Mark: NICE which sets the guideline for treatments on the NHS, sent us a statement, which said there has been no new evidence to suggest it should change its mind on how M.E. is treated, but it also said it had been consulting on its rules and will make a final decision later this year. Meanwhile the clinical commissioning groups in Norfolk also sent us a statement saying they were working with local patient groups to improve services for people with M.E. or chronic fatigue syndrome.
Further interviews with Jane and her Mum – who speaks so eloquently about M.E. including about how NICE and the UK medical profession needs to ‘up its game' and of the recent research into cytokines from Stanford University in America – and with Clare Ogden from Action for M.E.
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