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ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010


Charles Shepherd posted this to CO-CURE today

[B]ME/CFS feature on BBC West Midlands radio this morning - 29 March 2010[/B]

[if: Joanne Malin interviews Dr Shepherd, Tony X? (sorry) from the ME Association, and Tina, a patient with a book out. I think it's almost an hour long. Couldn't listen to most (listening with no visual support is difficult these days), but I heard a snippet where the ME Association was saying that they have a list of every doctor who treats ME/CFS in all of the UK.]

Listen Again: Move the cursor in the time bar to about 90 minutes into the programme to hear the item. This 'Listen Again' facility is available until 12.02pm on Monday, 5 April 2010.




Thanks for linking that IF.

Has taken a while, but I've transcribed it for anyone who might have been interested but missed the one week iplayer window.

It's quite big, so will take a handful of posts to put up in total I suspect.


Joanne Malin = JM
Charles Shephard = CS
Tina Blake = TB
Tony Britton = AB (Anthony, so that there isn't confusion with Tina Blake being TB)

Joanne Malin: Right, now it was given the label yuppy flu. Some employers and even medical professionals refused to believe it was a real medical condition. But as my next guest, Tina Blake from Worcestershire discovered, M.E. Myalgic.... oh Tina I can't even say it Enc.....

Tina Blake: Encephomalitis (sic (could just be a pronunciation thing)).

JM: Myalgic Encephamalitis, I will just call it M.E. after now, because I won't be able to remember how to say that. As Tina discovered, this M.E. can have a debilitating effect on your health. It made her virtually bed ridden, for a good few years actually.
Tina joins us now. Good morning Tina.

TB: Good morning.

JM: Along with Dr. Charles Shepard, who is an M.E. medical expert. Good morning Dr Shepard.

Charles Shepard: Good Morning Jo.

JM: And listening in we've also got Tony Britton from the M. E. Association. Good morning Tony.

Anthony Britton: Hello there.

JM: Just to start the discussion, can I go to you Dr Shepard? Can you explain what M.E. is?

CS: Right, in very simple terms, it's a serious, potentially very disabling neurological illness. M.E. as you tried to pronounce it, stands for Myalgic Encephalomyelitis, or Encephalopathy. The myalgic part stands for muscle problems, and this is primarily an exercise induced muscle fatigue, it's not tired all the time, and pain in the muscles, and the 'encephalo' bit means problems with the brain, so these patients have problems with memory, concentration, balance, temperature control, a whole range of neurological symptoms, which is partly where this awful 'yuppie flu' came from, and it's nothing to do with yuppies, but it does have something to do with a sort of ongoing flu, as most of these patients are previously fit young adults, they get an infection, they don't get over it, they get the muscle and brain symptoms, but on top of that they feel as though they've got a continuing dose of flu going on. So they continually feel infective, flu-like, under the weather with these symptoms as well.

JM: And Dr. Shepard, it really came to prominence, I remember, in the 80s. Is that right?

CS: Well, I think that's where this awful media term yuppie flu came in, but it's an illness.....
I mean I've researched it historically, and I'm sure it's been around for several hundreds of years in various names and forms. But really, the medical profession in this country first became aware of it just over 50 years ago when there was an outbreak, because it's not only individual cases, it's sometimes little outbreaks, following infections. And there was an outbreak at London's Royal Free Hospital, and it got into the medical journals, into the Lancet in 1956 following this outbreak at the Royal Free Hospital and at that point it was also called Royal Free Disease, because all the doctors and nurses went down with it and the hospital had to be closed.

JM: So it's been called all sorts of different things, but today we know it as M.E.

CS: I think the simplest thing is to call it M.E. or, the other name which I think is quite useful in the very early stages, cause not everyone with a post viral syndrome goes onto M.E but it's also called Post Viral Fatigue Syndrome, in a sort of milder, early stage.

JM: Post Viral Fatigue Syndrome.

CS: Yes. Which is what quite a few people get after an infection, and it's not something that always progresses into M.E. but it is the sort of first warning sign. And if you have an infection, you're not getting over it within a few weeks, then doctors would probably use the term Post Viral Fatigue Syndrome.

JM: Alright, well we've got Tina Blake from Worcestershire In the studio, let's go to you now Tina and find out your story. Did, what the doctor just described, did it come on after a virus for you when you were struck down with M.E. ?

TB: Absolutely. I was running a busy corporate production company, I was working long hours, and I'd started to feel a little bit unwell, didn't know what was wrong with me, went to the doctor's, they couldn't tell me what was wrong with me. And this was about 1998 and I just seemed to get progressively worse. And actually in 200 I sold my business because I was finding it increasingly difficult to run the business. I was constantly tired, constantly had headaches, and things that I would have just taken in my stride, I just wasn't able to cope with. I kept a hold of one contract, which was a couple of conferences and in fact I was running two conferences back to back in two different countries, training speakers, and one speaker had flu, and I remember looking at him thinking Gosh, I hope I don't catch that. And, I did catch it, and literally I was bedridden overnight. I mean, I finished the conference, I came home, and that was that really.

JM: Bedridden for pretty much the next two years of your life?

TB: Yes.

JM: So you've gone from you're a successful businesswoman, you're probably living life at too fast a pace, you know the word 'burnout' came into my mind when you were just describing how you lived your life, but there was no reason for you to be a whinger, somebody suffering from this 'yuppie flu', don't want to go into work, I'm calling in sick. It was your business, it was your life. Suddenly, you couldn't move. Overnight, you couldn't move.

TB: That's right. As I said, it built up over a period from, sort of, '98 until sort of 2001, and I believe very strongly that possibly I could have avoided it if I had acted slightly differently. I knew I wasn't feeling well, and I just sort of carried on and on. And then, suddenly , yes when it, when it did hit me, it just wiped me out completely


M: Erm, Dr. Shepard, what should people do on the first sign of the symptoms that Tina's just described?

CS: Well, I think if they're going through the picture that Tina has painted, and it is a very typical picture of someone who's starting this illness, they need to go and discuss this with their Dr. and they need to be properly checked over, and then they need some proper management advice on what to do in the very early stages. Incidentally, I can identify with what Tina has been saying, because I got an interest in this illness after I developed it myself following chickenpox many years ago, when I caught chickenpox from one of my patients, and there is certainly an element in this, that you get people that are often very conscientious individuals, and they go back to work, and I know this, I did this exactly myself, not feeling well, you try to put a show on, you try to get through it, and I think this is a major factor in those people who develop a more severe and long term illness with this. They don't get a diagnosis early on, they don't get correct management advice early on, and correct management advice early on is actually to rest and have some convalescence, and it's something that's gone out of fashion in medical practice.

JM: This is what I wanted to ask Tina next, what was the reaction when you went to the doctor?

TB: You see, I agree totally with what Dr. Shepard said, and if somebody had been able to help me then, I would have listened and taken their advice. I went to the doctor's several times, in fact several different doctors, and they just did not help me. I was saying that I was very tired, that I felt as if I had flu, that I needed to sleep all the time. This was even before I sold my business. And they just said that... it was implied that this was in my mind and that I was making this up. You know, I was told to take Aspirin, and one thing and another, which I did, but it didn't help. And, after I had sort of caught the flu bug and then was really suffering from it, I went again to a doctor, I went to several doctors, and again it was sort of implied that this didn't really exist. That somehow I had over stressed myself or something, or that, you know....

JM: Take a holiday....

TB: Take a holiday...

JM: It'll be alright...

TB: I mean, that was one of the reasons that I sold my business, because I was sort of believing, that no one could tell me what was wrong with me, and so I was thinking, perhaps I have overdone it.

JM: So, where did you get the final diagnosis? Who told you you had M.E. ?

TB: Down at a specialist clinic, it was recommended by a neighbour.

JM: So you travelled out of the region...

TB: I travelled out of the region, and I couldn't get myself there, I had to be driven there.

JM: OK, well let's bring in Tony Britton at this point, because you're representing the ME Association. Tony, good morning again.

AB: Good morning. Hello. And so in fact is Charles, he's our medical adviser.

JM: OK. But the ME Association must hear stories like this all the time. I mean this is a few years ago now, but it's convincing firstly, the medical profession that there is a thing called M.E. and that they need to spot it, and treat it.

AB: I think we'd agree. We've carried out some straw polls, and we hear stories, and we get about one in three of every doctor in the UK, have some disbelief in the illness. And they are not in a position to be able to help their patients, because, they don't want to listen to what they're being told, and they haven't been keeping up to date with their reading on the subject.

JM: So one in three?

AB: One in three, we guess, we guess.

JM: Gosh. Still disbelieve that it's a condition that they need to recognise and deal with. That's a very, very scary statistic isn't it actually at the moment. We're talking about M.E. this morning. If you'd like to join the discussion, you know the number, it's 08453 00 99 56, or you can text 07786 202 956. If you can relate to Tina's story. If you've been there, and suffered M.E., and you know, come out of it the other side, or you're still struggling, you know, we've got Dr. Shepard on the line, he's here to help you. So, please do join the discussion if you want to, 08453 00 99 56.


JM: .We're discussing M.E. Er, the flu, er, the disease that was once labelled 'yuppie flu', quite flippantly really, and we've just been hearing that still one in three doctors still have some kind of disbelief that this disease actually exists. We've got Tina Blake in the studio with us this morning. She was a businesswoman going about her life, earning a living, and was suddenly struck down with M.E. virtually bedridden for two years. She's come out the other side, she's written a book that she hopes will help others. We've also got Dr. Shepard with us, Dr. Charles Sheppard, he's an M.E. expert, and Tony Britton from the ME Association. Also joining us is Patricia, on the line from Hereford this morning. Good morning Patricia.

Patricia: Morning.

JM: Now you heard me talking about M.E. on the television this morning.

P: I did yes.

JM: And what's your story then? Have you suffered M.E. illness. (end was unclear)

P: I have, I am actually, I began, I was a special needs teacher, and I slowly saw the last six months of my teaching drift down to zero, so much so that I ended up not having to be able to go in. And then six months after that, I was diagnosed with Chronic Fatigue Syndrome. The doctor at that time said it was very common amongst teachers. The first six months I probably spent sleeping. From then on, I had, like, major relapse. I've tried to go to work, and then I'd do too much and then I'd relapse and just have to kind of face up to the fact that maybe I won't be able to work in the future.


JM: Well, Patricia, my guest in the studio, Tina Blake, is nodding her head. Actually, reading your notes Tina, you spent a lot of time sleeping at first didn't you? So you can relate to what Patricia is saying.

TB: Absolutely. Yes, probably sort of sleeping 18 hours a day. But, basically I realised, that I had to deal with it myself. And I don't mean it badly to any of my friends and family who tried to help me, because they did try to help me, but it was one of these things where you stand up in your own shoes in the morning, and one of the things I did to sort of try and move it forward, I was told that possibly, I might not walk again. I was having a lot of trouble with my walking, and my attitude was 'you watch me'. And so what I did was, try to work things round my sleeping, so I would set myself small challenges. If I can get out of bed, I will look at the birds eating bird seed on the bird table, this has been a good day. And it's when I first began to understand how much our minds also are interrelated with our bodies. Because, if I could make myself get out of bed, I would feel a little bit better.

JM: So what's the one tip Tina that you could give to Patricia this morning, listening to this?

TB: That, I think, you must never Patricia think, I might never be able to work again. I was certainly told that I wouldn't be able to. And I think that one of the terrible things that people that suffer with M.E. is that, there is, there is nobody who says, you will get better. One of the things that I found so frustrating was that I had no reassurance at any point that I was going to get better. And what I would say to you is that the way you think about yourself, and the way you think about your ability to do things is extremely important. And I think the... I mean I talk in my book a lot about the power of the subconscious mind.

JM: What you're saying to Patricia is take one step at a time.

TB: Take one step at a time. Set yourself a small challenge. Even if it's only I'm going to get out of bed and wash my face, and I'm going to do that by 10 o'clock in the morning.

JM: OK Patricia, so stick with it, and you might be lucky like Tina and... well you will, you will survive, and you will get over it. Lovely to speak to you this morning .
Er, Dr. Shepard, isn't there just a pill that you can pop, and it'll cure you of M.E.

CS: There is not a pill you can pop. There is no cure for this illness as far as drug treatment is concerned at the moment. We are looking, we're doing clinical trials on a number of different drugs, and certainly some of them are showing some promise, but at the moment, the way in which doctors would use drugs in this condition, is really to try and help with alleviating some of the symptoms. Particularly things like pain, if that's a major problem. You might use drugs in connection with sleep, because sleep disturbance as Patricia has said, is a major part of this illness. Particularly this requirement to have long periods of sleep very early on. And then you might use it in connection with some of the other neurological and infective types of symptoms.

JM: So you have got some drugs, but there's no wonder cure, sadly, whatsoever, at this time anyway.
Erm, can I just say Tina, reading your book, it's called 'Fit For Work, Fit For Life'. I've just turned to the recipes at the back, because I've just seemed to, er, skimming through, you believe what you ate had a massive significance on the disease and how you recovered from it. So, what kind of things, if people are listening today and suffering, what kind of things should you maybe put in your diet, in your experience that would help.

TB: Well, the first thing that I did, 'cause I noticed for instance, that if I ate potato, my mobility was much reduced. I would really have difficulty walking. If I ate strawberries,I couldn't speak.
There were really, really dramatic things that happened, and so I went right back to basics, and just ate steamed vegetables, tiny bit of fish, took out all additives. That was the first thing I did, the most important thing, take out all additives. And then I went back to, you know, basic nutrition things. Drinking lots and lots of water as opposed to anything else, it was the drink I drank more than anything else.


JM: And you really believe that this started to bring you out of the disease?

TB: Absolutely certain. And, I then went on, with some help, in the specialist clinic I went to, I was introduced to a food rotation plan. Whereby, you eat a certain type of food every five days, so that you give your body a rest from food. It's a normal allergy treatment. If a child's got an allergy to a food, you give your body a rest from it.

JM: OK. Well, let's just ask Dr. Shepard, is there any evidence what you eat might help your recovery Dr. Shepard

CS: I should think that there are certain aspects of nutrition which can help people with this illness. I think that I'm going to slightly part company with Tina here, and say that I do also see a number of people who go on really quite radical changes to their diet, and this actually can be a bad thing for people with M.E. These are people who've got an awful lot of restrictions on what they can do with their life, and some people do start cutting out all kinds of food and putting themselves on really quite severe restrictions, and I don't think this is a good idea generally speaking. Some people do have food allergies and food sensitivities, and identifying them can obviously be helpful. Drinking plenty of fluid is helpful. Avoiding things like caffeine and alcohol is helpful. But, the evidence for highly restrictive diets is not there, and as I say, there can be dangers in cutting out certain foods, and vitamins and nutrition or supplements and things, which go with these foods, which could actually make people feel worse, so I think if you're going to go down this route, you have to take advice from someone who knows what they're talking about.

TB: Erm, Well I do understand what you say there, and in a way I agree with you, however, it was, it made such dramatic difference to me to suddenly not be eating a lot of wheat, not be eating a lot of dairy, not to be drinking alcohol, not to be having caffeine.

JM: Which is the two things the doctor's just mentioned as well.

TB: I hear what you're saying, I don't want to put anybody on to, er, some sort of kooky restrictive diet, however, what I've found when I then started to develop that, because, as I say I realised it was only me going to make me better. And as I cut out those things I did improve, and my mind was slightly less foggy. I mean, I went from being unable to talk with somebody on the telephone, because unless I could see their lips moving I couldn't follow the conversation, I went from there to being able to go OK, let's try and research this a bit....

CS: Can I just come in with one very important point here, because I do see people who cut out wheat from their diet and feel, and say they feel better and there is a very important, and again, rather under recognised condition in adults, called Adult Onset Celiac Disease, which is gluten sensitivity, which you treat by removing wheat from the diet, obviously, and this can have a number of overlaps with M.E. It causes fatigue, it causes irritable bowel type symptoms, which quite often occur with M.E. as well. And, routinely, I recommend, in fact it's part of my routine screening program, I think it should be routine screening for anyone who's queried with this disease, especially if they have irritable bowel type symptoms as well, they must be screened for Celiac Disease.

JM: Oh, OK.

CS: And people with this illness should not go onto wheat free diets until they've been screened and this has been eliminated as a cause, because if you, you know there are long term problems with Celiac Disease if it's mistreated, and to just go onto a self-help wheat free diet because that's making you feel better, without knowing that you may have Celiac Disease or being supervised for Celiac Disease could cause you really serious problems in the long term.

JM: OK, Dr. Shepard, we've got Betty on the line now from Atherston. Good morning Betty.

Betty: Morning.

JM: So you've had M.E. since 1986.

B: Yes. And it took 15 years before anybody told me what was wrong. I was, you know, just treated with disdain. Many times I've been to the hospital, and I still haven't seen a neurologist.

JM: And you think you've still got the disease now Betty?

B: Oh, I most certainly have, I'm still in bed right now. I had a relapse in November. I've been in bed three months, and recently I've been able to get up just in the afternoons.

JM: So from 1986 to 2010. Gosh, it sounds like it's ruined your life Betty.

B: No. No, you don't let anybody or anything ruin your life do you.

JM: But how can you plan anything? If you don't know if you're going to have a relapse. If you look forward to a holiday and then you can't get on it.

B: Well, we should have been in Llandudno last week, we had to cancel it.

JM: Gosh. So, what are you going to do Betty? From here on in.

B: Well my doctor is at the moment, trying to find a neurologist locally who has an interest in M.E. But, as I say, I went into hospital because my body and brain collapsed at the same time. I was taken ill on the Thursday the 29th of May 1986, with flu like symptoms.

JM: And your doctor is still trying to find a specialist for you Betty?

B: He's only recently been trying to find somebody.

JM: OK. Betty, lovely to speak to you this morning, sorry we've got to move on, it's time for the travel....


JM: .but right now we're talking about M.E. It's a very debilitating illness, used to be known, very disrespectfully, as yuppie flu, but it can really have an effect on people's lives. We're discussing M.E. now on BBC WM.
And, I want to go straight back to Dr. Charles Shepard who's an M.E. medical expert. Just before the travel and the news there Dr. Shepard, we had Betty on, 15 years she'd had M.E., and her doctor is still trying to find her a specialist. I couldn't believe that statement.

CS: Yes.

JM: Can you believe it?

CS: Well, I can believe it, but it really is appalling. This is a lady who clearly needs some specialist input into her condition, and there are a number of specialists around the country and some, actually, specialist clinics that have been set up to deal with this illness. We on our website, which is www.meassociation.org.uk have a full list of all the clinics, and all the doctors in the United Kingdom that see people with this illness on a specialist basis. So, I think Betty or her doctor need to pop along to our website and get some details of some local contacts, and get her referred and seen.

JM: OK, well let's bring Tony Britton in now, who's also from the ME Association. Tony, Dr. Shepard's just mentioned your website there, but what help and support is available for people who are suffering with M.E.

AB: Well, there are various ways in to finding support. A simple way is a phone number. The ME Association has a helpline, it's open for 6 hours during the day, between 10 and 12, between 2 and 4, and 7 and 9, and the phone number is 0844 576 5326

JM: 0844 576 5326. Are there local West Midlands based groups as well, that people can get involved in.

AB: There are some excellent local groups. We know of seven, and there's a good one covering Tina's area in Worcestershire. There's another one in Herefordshire, and there's a group based in the Kenilworth area, which calls itself the Mid-Warwickshire ME Group. Coming into Birmingham, there's the Solihull and South Birmingham ME Support Group, there's one in Walsall, and there's one which is possibly a bit far out of your patch, it's Coventry based, and they call themselves the Warwickshire Network for ME. They do talk to each other, and they will all offer a welcome to anybody who's feeling particularly isolated and frightened by this illness.

JM: OK, well I just want to throw that to Tina Blake who's the lady here, who suffers, she was bedridden for almost two years, and she's our guest in the studio this morning. I'm just wondering how you got the support of those groups if you couldn't get out of bed Tina?

TB: That was the problem actually, that I didn't really know that there were those sorts of groups around. And because doing anything was just, took all your energy, and your mind is full of fog, you don't get to hear about them. You don't, you feel terribly isolated.

JM: Well, hopefully we've helped a few people by bringing the subject to the fore this morning.

TB: Yes, and I think you have to rely on other people to help put you in touch with them, because certainly I think somebody who had understood what I was going through much earlier would have helped me enormously.

JM: There was one thing though, If I could come back on what the doctor talked about, there is no pill.

TB: No there is no pill, no magic cure. But something I found extremely helpful was acupuncture. I'm very lucky in that my brother Martin Blake does acupuncture and he worked out with my father, some points. They actually put a needle in my toe. And I still have very regular acupuncture, and that seemed to up my energy levels. Literally, after an acupuncture treatment, I would have a lot more energy, I might even be able to go for a small walk.

JM: Is that something that you would back Dr. Shepard? Acupuncture?

CS: Well, yes, I mean there's a whole range of alternative and complementary approaches to this illness. I think at one end of the spectrum that there are the miracle cures, and the very expensive treatments and the money down the drain end of the spectrum, but at the other end there are perfectly acceptable approaches, I think , like acupuncture, and acupuncture as we know, can certainly help with pain. So, I think if you've got faith in that sort of approach, and particularly if you've got something like pain that conventional medicine isn't helping with, it's well worth a try. But unfortunately, you're probably going to have to pay for it.

JM: The thing is, you might as well try it mightn't you. Whether it's changing of your diet, or taking the acupuncture, there is no medical, wonder drug. You've told us one in three doctors don't really accept that it's a condition, so sometimes people will have to go out there, and you said, pay for treatments, try their own thing, but if it works for them, surely it's a great thing.

CS: Er, yes, there are things that are worth trying, and sadly as we're hearing, and you're inferring I'd say, to a certain extent, this is an illness where, you know, it's a long term chronic illness where patients to a certain extent have to become experts themselves in dealing with it.

JM: OK, Dr. Shepard, lovely to speak to you this morning. We're completely out of time now....(more thanks to guests, and phone numbers, web details).
And Tina, I know you've got loads to say on the subject, we could go on for an hour, there's a lot to say. But, your book is 'Fit For Work, Fit For Life' and it's really your story isn't it and it's listing, what helped you, and it's worth others having a read through if they want to. You've got a website to give out just before we finish.

TB: Yes I have, if you contact me at www.fit4workfit4life.com and register as a member, then I will give you any help and advice for free.

JM: And sometimes it's just worth trying what somebody else tried, and if it works for you it's great. Tina Blake thank you so much for telling us your story this morning.


you are absolutely amazing bb! I thought that an hour or so coverage on the BBC was something to celebrate. Thanks so for saving it for posterity - and for making it possible for thos of us who can't listen to access it.

Maybe you'll be lucky and will be able to post it all in one. If not, I wonder if any of the techies here know how to make it easy for you to do so. I think Andrew figured out how to post a pdf file so he wouldn't have to break up his doctor list into segments. But, some people may not be able to access pdf.

Anyone have any knowledge/ideas to save bb some energy?


holy moly you're fast!

Completely ignore the 2nd and 3rd paragraphs of my above post. Bb has it taken care of it.


It's amazing how much umming and ahhing people do when you come to write it down, even when it doesn't sound too bad just listening. I've kept it to a minimum, but did edit a few bits where those 'pause for thought' words and sounds just made the text lose it's thread.

I was unsure about leaving in the links and info that Tina Blake gave, as she struck me as another potential Phil Parker, with family, book, web, and CD package all in tow.
I do tend towards suspicion though, and she was working in corporate presentation before getting ill, so it may just be what it is. Up to each here to make their own decision.
at first I tried fitforworkfitforlife as the web address, and it just looked like a holding page, but using 4 instead you get the proper one.


iherb code TAK122
Blackbird thanks ever so much for transcribing all of that. Like IF said it makes it so much easier for everybody, but what hard work for you. Much appreciated.