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On BBC iPlayer there's a good discussion of ME (skip to 2hrs19). Here's a transcript and here's the link for the art exhibition being discussed.


RadioMan (RM): Now, a County Durham mum whose daughter has got ME is exhibiting her work in the Life and Art photography exhibition, in an attempt to help people understand the condition. After feeling frustrated and guilty that she could do little to help her daughter, she spent time researching ME, which inspired her to try and visualise the illness through the lens of a camera. Juliet Chenery-Robson is in the studio with me this morning, Juliet good morning to you.

JCR: Good morning

RM: And of course there are *still* significant numbers of people who say it doesn't exist at all, ME. So what do you say to them?

JCR: I just cannot believe that people still do not believe that this is a true neurological illness, despite it being proven by the World Health Organisation; there's lots of medical evidence now, if people look into the research, there is lots of physical proof taken from post-mortems now that there is physical changes taken place within the body and it's not all in the mind.

RM: And do we know what is likely to trigger it?

JCR: That is the big question; we're looking at different aspects, there's lots of research going on, in Newcastle especially at the moment, looking at er genetic relationships, proteins, and viral infections, but we're still sort of struggling to find that exact cause.

RM: So when did you realise then, that all was not well with your daughter?

JCR: It started before her thirteenth birthday. Erm. She started getting very very tired, losing appetite, I mean at first we thought typical teenage, that it might be anorexia was coming on but then there was more symptoms coming in; and just one day she just broke down completely, she couldn't go into school. And er, we thought it was a virus at that point, so we took her in to see doctors, who again said it was viral infection; we went back a couple of weeks later, and this happened a few times, until we got a doctor that understood about the condition, and she pointed out that this probably was ME and referred us to a pediatrician at Durham Hospital.

RM: And, and so do you think most GPs would probably fail to spot ME and put it down as, as some viral illness?

JCR: That's very likely, I mean it's quite a lottery as to, depending on which doctor you get, you can be very fortunate that someones done their research and understands about the condition; but there's a lot of doctors, probably more of the old school, that do not understand it and haven't had the medical training, because in fact it's still not taught in medical school. So, there needs a lot more awareness being built up within students in medical school I think at this moment in time.

RM: So, how has this affected your daughter, and the whole family?

JCR: It was, devastating especially in the first few years. Erm, it was a struggle because I've got a younger son as well, and I had to give up work, um, caring for my daughter; and after the first two years, it becomes very isolating for the carer as well as for the sufferer, and at that point you become, sort of, what can I do that's positive, because at that point I was getting very depressed in myself; it's awful seeing your daughter suffering like that and you can't do anything. So that's when I embarked upon doing something positive with the MA in photography and trying to raise awareness that way.

RM: I mean there is this, this feeling as a parent isn't there of being powerless and you try and get all the advice that you can (yep) and you try and look for a solution, er, you know some people will turn to homeopathy for example; have you found anything that does help a little bit?

JCR: Not personally. We tried different things like reverse therapy, and changing in diet, pacings - pacing is probably one of the best things that people with ME can do but it's very difficult especially for a teenager, to sort of pace her daily life, it's quite a struggle to do that. So there's, there's no proper symptom cures that you can do so you just have to take each symptom on its own; for the sleep deprivation she was [prescribed] melatonin to help her sleep; erm, painkillers to help with the muscle pain; and, erm, then unfortunately because it became chronic illness and it was lasting so long she developed depression, and so that had to be treated separately as well. But it's definitely not a ne- sort of a, a mental illness it's a neurological disease, with a biological fingerprint.

RM: So your daughter is now twenty, yeah?

JCR: Mhm, yes.

RM: So how did all of that affect her schooling?

JCR: Well unfortunately she was unable to finish her schooling. She tried going in for one or two days a week to start with but it was not working. It was difficult for the teachers to understand it and give time towards it, so she went to have home schooling; erm, but unfortunately because one of the symptoms with ME is lack of concentration and brain fog, it became very distressing and anxiety sort of driven for her, so she struggled with that as well. So she was unfortunately not able to get any qualifications.

RM: So it really does have a tremendous knock-on effect (huge) doesn't it. Let's bring Jennifer Elliot into the conversation, from ME NorthEast. Jennifer good morning to you.

JE: Good morning.

RM: Why is it, then, that this illness still isn't recognised??

JE: Well it is recognised, I think we just need to move on now, that it is a serious debilitating illness; it's recognised by the Department of Health, by the World Health Organisation; it's a case of moving on and saying, we have something here that really needs to be seriously looked at and managed, and research is desperately needed to find out what the cause is so that it can be treated properly.

RM: But there's a fair chance isn't there, that if you present with the symptoms to a GP, er the GP will come up with a misdiagnosis.

JE: Well sadly yes, a-as Juliet says, there's no training for GPs in diagnosing and recognising this condition, and it is a case of diagnosis by exclusion (they'll look for a lot of other things); and we do know now that the sooner this illness is diagnosed and managed, then the better the outcome for the individual, especially in young people. If it's picked up early enough the prognosis is very good.

RM: And is it something that's likely to affect teenagers, or at least that's when the onset it, more than it is people later in life?

JE: It affects all ages. All social classes. It's right across the board. It affects more females than males, but nobody really understands that. There is a lot of research now that's identifying genetic faults, and that needs to be investigated much more to find out what, what the trigger is; but we have children as young as three being diagnosed with ME, and adults as old as 80 being diagnosed with it -

RM: H-how do you know for sure that a three year old can have ME?

JE: well, heh, this is the problem I think retrospectively when children are finally diagnosed with this condition, you look back and you can see that they were sickly children from the start; and these are young people who wouldn't be trying to pull the wool. It's not the kind of teenage, adolescent [thing] of, you know not wanting to go to school, not wanting to participate, being lazy. Which is some of the stigmas that are attached to this illness. You know we deal with young children who just find it very difficult to do day-to-day things, they just don't have the energy.

RM: Right. I want to bring in Ian Swales at this point, Ian of course the MP for Redcar, Ian good morning.

IS: Good morning.

RM: This has been debated in Parliament, hasn't it? What was that about then?

IS: Well erm, yes I triggered a debate in Parliament back in February, because it came to my attention, really the sort of stories you've just been hearing, you know from Juliet and Jennifer, and it's a bit of a Cinderella disease really, that not enough attention is paid to causes, potential cures and so on and I decided to try and highlight the, highlight the disease; I'm the Vice Chair of the all-party Parliamentary Group on ME and you know we're working hard to try and raise, raise awareness.

RM: S-so can you e-try and campaign then to get more money to go into research, is that the idea?

IS: Well that's, I mean that's one of the key things, but er right at this start as er, as Jennifer was saying it's getting recognition that er, of where this money ought to go and there's still a battle that most of the research money tends to go into behavioural therapy with the assumption being that it's actually er, you know all in the mind as it were when er more and more evidence and I think all the sufferers are aware er that there's a lot more to it than that and it isn't in the mind, you know, i-it's a biological disease and er, but there are some good signs, the Medical Research Council right now has got er a process where it's accepting bids for new research, and it's broadened the fields across which erm it will er accept bids into areas like genetics and er, biomedical causes, virus causes and so on, which hasn't been the case in the past.

RM: So it may be a long road, but er you believe we're making a start on being serious about er doing research into it.

IS: Well er, well I'm er, I've got to be optimistic but you know I have to say that erm, there's still battles ahead I mean only recently there was er, er some research that had some viral connections to a particular virus, now, you know people are questioning that, so it's kind of two steps forward one step back really, but, er, yeah we I mean we've got to do it, when you, when you actually meet sufferers of ME as I have don you know you can't do anything but campaign for them and er, one aspect that hasn't come out is the er, the awful impact on children; we heard Juliet's story and actually in a way she's one of the lucky ones, quite a lot of parents lose their children; they get taken into care because er, the parents are deemed to be bad parents because they're not sending the children to school and er, you know you can't imagine anything worse than that when er one of your children is sick and you're doing your best for them, actually losing your child you know but that happens (yeah) particularly in Scotland for some reason.

RM: Ian thankyou very much Ian Swales who's er the MP for er for Redcar; Juliet listening to that then does that, does that fill you with hope?

JCR: Yes, I mean, what we really need is a lot more money put into research into this area, compared to other illnesses that are just as devastating like cancer and MS. It- I don't think people realise what a devasting effect this illness can have on whole lives and families, and it can le- unfortunately lead to death in some cases, which people aren't aware of.

RM: Just briefly, tell us about the exhibition then?

JCR: Right, yes the exhibition will take place at Peterlee at Gemini House, Whitehouse Road; it will have an open evening on Tuesday the 11th of October from 5.30 till 8pm, and everyone is welcome.

RM: Excellent. I've been looking at some examples of what's gonna be on show; how would you describe the photos yourself?

JCR: It'll be a combination of two exhibitions that I had; one was called Unpredictable Patterns and the other one A Diagnosis of Exclusion; so there's about 70 images with texts, quotes, so it's quite a broad-bearing one, so it'll be quite interesting for people to come and have a look at.

RM: I hope it goes well, I'm sure it will, thankyou.

JCR: Thankyou very much indeed.

RM: You're welcome Juliet Chenery-Robson.