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What you've said

Monday 8 November
Sick and Tired.

This forum lists your first comments on Sick and Tired


I'm a paramedic who has been ill as a juvenile with arthritis. then a long spell of good health with a subsequent career in the NHS then M.E. and retirement. I'm now searching for the answer to get me well and back to work and independence. Will there be any follow up show in any form covering the adult perspective as well as all the physiological evidence out there that seems to be falling into a black hole. The story needs to be told - many of the people I've spoken to since the show feel that only half the story has been covered. I had a chat with someone who you had contact with for that M.E. show and they tell me that you cut out a sequence where brain scans were being analysed... It's a shame because that would have given many people with M.E. even more to be thankful for.
Stepen Ralph

I have ME and at the beginning a social worker threatened to put me in a unit for troubled adolescents if I did not start to see her for counselling sessions. This "counselling " consisted of asking me how much my parents argued. Not once did she ask me how changing from an energetic social person to a bedridden state was affecting me. She was blinkered and believed that I was ill due to non-existent family problems. I have since changed doctors and my current G.P is very sympathetic and has allowed me to progress at my own rate and this seems to be working.Having seen both sides of the medical profession I realise how much a negative attitude can damage your self-esteem and possibly your recovery.
Kate Ansell
Bournemouth

The illness is almost certainly caused by exposure to OP chemicals which interact with the body chemistry causing various processes to malfunction, notably the energy cycle. This is not recognised as we use OP chemicals in our food and on our new clothes, furnishings etc. Also used in the sports fields etc. A major problem of which we used not to have until the introduction of this new type of insecticide at the Royal Free Hospital in the 1950's. Psychiatric treatment is dangerous and an evil practice to subject these patients to in the light of the fact that other respected figures insist on OP use to prevent from having inflammable clothing. Two wrongs making an even worse wrong! John Fryer MSc Analytical Chemistry
John Fryer
Bristol

Our son developed chronic fatigue syndrome at the age of fifteen apparently following vaccination. It was a difficult time for us as it was extremely hard to know how to cope with an illness nobody seemed to understand. Some support from the medical profession would have been of great help. However, we were referred to a psychologist and instead of the needed support we were accused of causing our son's illness. This was extremely hurtful, very unproductive and it took away almost all our hopes that our son could receive any form of medical aid. Potentially it could also have been very destructive to our family relationships. In spite of lack of help from the medical profession, fortunately, our son is now recovered. He gained his high's through correspondence courses and now is fully recovered and in fourth year at Edinburgh University.
Anne Thomson
Edinburgh

Excellent programme. I am a psychologist who has been fighting to expose the use of MSBP in cases of real illness since 1996. I made a programme which was aired in New Zealand but can't be aired in this country. The stories which you reported on are shocking and just like other I know about. Thank you for beginning to expose this madness. Please expose more.
Lisa Blakemore-Brown
Pagham West Sussex

Two years ago, while in South Africa, I was diagnosed as suffering from the Barre-Epstein syndrome, a virus not unknown in that region. After watching tonight's programme, I was struck by the remarkable similarity of symptoms between those that I suffered, and those described by the young people who you interviewed - paralysis, mental confusion, fever, loss of appetite,etc. Thankfully, I was diagnosed almost immediately, and total rest was ordered, with the result that I am able to respond tonight. I cannot, however, having experienced such discomfort, wonder how any doctor could possibly imagine that such a disease could be psychological, even less be alleviated with exercise. Nonetheless, I was struck by the remarkable similarity between the symptoms of MS (known mostly in the developed countries) and those of the Barre-Epstein syndrome
Peter Hankey

Suffering with ME for 2 years now, I still have not seen much airtime given to the subject. Nor have I come across any information either at doctor's surgeries or on the Internet, I'm glad to see that the BBC has actually posted some links to ME sites in the UK. The internet can be used for something constructive. Well done.
Russ
Southport, Lancashire

As a child psychologist I would see that my role is to help children recover from a wide range of difficulties. In the treatment of ME (and other chronic illnesses )it seems that a gradual programme involving excersice, rest and understanding is the best way forward. Of course, children should be treated at home with the help of parents and a team of professionals, including psychologists(and possibly psychiatrists)and Doctors. Many of use trying to help chidden with psychological difficulties spend our lives attempting to reduce children's fears of psychological help- programmes which present such an extreme and unrepresentative image of help only serves to frighten families and in the long run harms children. Would it have really taken much effort for the research team to have visited a modern community unit? - it may have saved many families much anxiety.
Con. Clinical Psychologist
Manchester

Does the viewer realise, do you think, that the judge, child psychiatrists, or social workers, cannot go on record, and so are defenceless if you deal with individual cases? Why do you feel free to quote only one side of the story where this is so - entirely distorting a complex and sad case?
Belinda Shaw
London

I have ME and I pushed myself too hard and this is where Mr Prendergast's theory falls down. If you don't appreciate the very real physical problems associated with ME and push too hard then the result is that you can become worse and regress to second stage ME where the physical and neurological symptoms become worse. It is also important to realise the irony of this illness - that the longer you are ill with ME and the more you push against it, the less chance you have of 100% recovery in the long term. I have been fortunate in finding some relief from The Centre of Complementary Medicine in Southampton where the consultants are both qualified physicians and homeopathic specialists and they can combine the two kinds of treatments, which have helped my varying symptoms . I send my best wishes to Georgie Sheldon - I know what she is going through.
Mrs K Necker

Excellent program. I have trained as a psychologist for five years and learnt about ME when I was diagnosed with it last year. I researched what little evidence their is and I'm sure we use the term ME to cover a multitude of illnesses. But I knew enough to say may disease was now a psychiatric illness. I took the approach of doing as much as I could without over doing it, modified my diet etc and a positive mental attitude and support friend helped me through. Any illness will get worse if the patient becomes more unhappy. You cannot separate the psychological from the physical they are one and the same!
Angela
London

It would be wonderful if medical doctors could keep an open mind rather than concluding that a diagnosis has to be right in one or the other branch of medicine-would anyone today advocate bloodletting for treatment or straightjacket or rape?? What scientific evidence do medical practitioners have of a psychological or psychiatric condition-if they do not have the evidence, but another branch of medicine has, at least to a greater degree, then why continue along a road that, on balance, has no reasonable foundation?? Thank you again for tackling this subject, especially on behalf of children who may feel like the proverbial pawns....
Mr Gunter Piontek
Bolton / Lancs

Treatment from a classical homeopath can be of benefit in the treatment of ME and is most certainly worth a try by anyone who suffers from it. Homeopathy is recognised as part of the NHS by act of parliament and should be freely available for all who wish to try it to aid their return to health.
Christine Lowson
Teddington, Middlesex

Both my sister and I have experienced ME. The prejudice we have come up against is phenomenal, because it is not a visible illness we have been treated like attention-seekers and malingerers. The comments and attitudes of other people are as much of a battle to cope with as the M.E. itself.
Melinda Williams
Bournemouth

Am I alone in thinking that the programme did nothing to dispel the disease as still being seen as merely affecting the affluent - i.e. 'yuppie flu'? Whilst I felt nothing but sympathy for the children and families concerned, why did it show the sufferers to be from respectable, middle class homes? Where were the working class sufferers? Are there any or could it be the case that the parents featured can afford to use the services of the top professionals to highlight a condition that many poorer people may have to simply shrug off and get on with it?
Julie
Wrexham

On behalf of the ME Association, we were very grateful to this programme for highlighting a desperate injustice currently being perpetrated on children and their families. Through our day to day work, the demand on our helplines etc. we are aware that many many families in the UK are facing similar dilemmas to those shown on the programme. Thank you for giving these children and their families a fair hearing. More information on our work for young people can be found by contacting our Head Office. mea@meassociation.org.uk
Stephanie Woodcock
Vice Chair ME Association

I have never felt so insulted, angry, disgusted, distressed by the attitude of Dr Pendergast in this evenings programme. I am 32 I have had M.E for 2 years and am pretty much house bound. If I had the energy I feel I would go to London and run the man over - what an absolute Quack. It is like trying to treat a throat cancer with a course of cigarettes. The programme had some and only some good points - given by the sufferers - and didn't seem to go down the track of explaining what it is. We receive absolutely NO funding NO help there are very very few M.E centres and there seems to be no NHS funding allocated to this terrible D I S E A SE ! - it makes me want to get up and fight, but I have absolutely no fight in me. It is down to the media to give people the true information and not to confuse people with programmes ' is it or isn't it psychiatric '. ABSOLUTELY UNCONDITIONALLY NOT !!!!!! Take me for instance - I had a brilliant job earning between 40-50k per year, a company car, I have a nice home, I went to the gym 3-4 times a week, I loved going out clubbing, restaurants, cinema, walking, holidays I'm married to a wonderful wife. Now most of that is gone , only the house (luckily) and the wife remain. Why in hells name would I want to stop all the rest, why would I stop my Life when it was treating me so well? - ill give you the answer - Because I am desperately desperately ill - NOT DEPRESSED OR PSYCHIATRICALLY TROUBLED !!!. Please Please Please make a programme on what M.E is - id be happy to go on it and give you all the names of Doctors you should be interviewing NOT THESE UTTER IDIOTS. I do realise that your programme was trying to show our point of view but as I said it in my humble opinion would come across to a non sufferer as a 40% to 60% for against. It needs to be 100%, we need help, we need Your Media help, please help.
Dave Eden

I am a medical doctor who practised in the U.S. and have worked with Chronic Fatigue Syndrome. I would like to express my opinion.   The program was excellently presented and points out the unfortunate situation that the condition of Chronic Fatigue Syndrome is not understood and/or accepted as a real physical illness by many in the medical profession. What happened to the sixteen year old boy who was taken away from his parents, not listened to, and confined against his wishes should not have happened in a country that holds justice as a high value.   Again, this was an excellent presentation of the current controversy with this illness, and I hope that because of this airing those with the condition will be benefited.
Vincent Palermo M.D

This was an atrociously researched piece of journalism which, had it been submitted to a medical journal, would have been rejected out of hand. It was basically a broadcast spat between two consultants at opposite ends of the medical spectrum who, oddly enough, had differing opinions on a condition about which very little is known. The programme based itself around a survey taken from a totally biased section of society, namely members of an ME support group who are obviously going to believe that they are right and anyone who disagrees with them is wrong. No mention was made of the fact that all the children featured came from obviously middle class backgrounds (I can't think of a biological illness which affects people solely on class basis) or of anyone who had benefited from physchological intervention. Of course the middle classes are going to disagree with doctors and take legal action - they have the education and the money to do so. As for saying that children were happier having left the hospital - how many children want to be in hospital? Any kid I know would rather be at home, staying in bed all day then going to school. That doesn't make it medically sound opinion. There is no other condition I can think of in which a doctor would recommend a patient not to take exercise (under suitable supervision).
Simon
Leamington

Although I know I will suffer for the effort tomorrow, I have to comment on the programme sick and tired. I myself collapsed with ME 3 years ago. I watched the programme with tears in my eyes recognising each symptom the children described.
Mark Sergeant
Hull

I was appalled by this programme. In this day & age of so-called enlightenment, Dr Prendergast and his approach to ME in children reminded of how patients used to be treated in Bedlam. When ME was first being diagnosed in adults it was also blamed on mass hysteria (usually by male doctors faced with female patients with an illness they could not understand), psychological problems etc., when it clearly has much in common with a post-viral state only more so. Today, there are growing numbers of doctors who are prepared to concede that ME is an organic illness in its own right, so why children should be considered to be immune and to have `psychological problems' driving them to try and avoid life as he seems to think, is beyond me. I sincerely hope that this programme will enable parents and the children themselves to resist any suggestion that they should submit to the tyrannical dictates of any one doctor who seems to think that he has the right to demand that they accept his views and treatment above the opinions of their own paediatricians and even their own knowledge of their children and their personalities. I have frequently been disturbed by things I have heard and read about the state of medicine in this country today (which is one of the reasons I am no longer practising medicine as a career), but this is the first time that I have felt so incensed that I have needed to air my views!
Dr Jill Edwards
Crewe

The Panorama Sick and Tired programme was excellent. Ourselves and other parents have fallen foul of a similar attitude in some paediatricians' attitude to AUTISM. The parallels with M.E. (a reluctance to diagnose autism, turning to Social Services for enforcement when parents do not agree) are interesting and disturbing.
Andy
SW London

While I found some aspects of the programme interesting, there were areas of major concern! I was particularly unimpressed with the use of camera shots of the former Birmingham Children's' Hospital. It was clear that you were trying to make some spurious link with the derelict state of the hospital and the theories of one of its former employees. Why did you not take pictures of the brand new children's hospital down the road? Wouldn't it have fitted in with your agenda? Indeed the use of camera shots throughout this production betrayed bias. The opinions of many of the doctors which were used to defend the programme's 'thesis' were also concerning. They showed a real distaste for any type of psychological evaluation or input for this 'disease'. This was unhelpful and unrepresentative for a profession which claims now to follow the Bio-psycho-social model of illness. In conclusion, isn't it revealing about the double standards of our own society that, while a Jehovah's witness refusing their child access to a blood transfusion would receive universal condemnation, parents who deny their child access to psychological treatment are treated like all-action heroes? Your clever use of manipulative camera angles and waffle-ridden, issue-evading Consultants would make Dr Goebbels proud, but the educated, license paying viewer expects better!
S. Newlands
Birmingham

In my experience over years of practising medicine (I am now a GP) I found psychiatric services frequently rather damaging to patients wellbeing. But I would like to point out that in contrast to your programs view psychiatrists do not do psychological treatments. They are not qualified for it and have little understanding about human psychology. This is the domain of psychologists!! All the cases you have shown would have largely benefited from psychological treatment. If not curative it would have been supportive and certainly would not have taken any approach to isolate and therefore willingly harmed those patients. Please could you clarify to the public the extreme importance to differentiate between psychology and psychiatry!!! - It is unfortunately a very common mix up that causes mistrust in patients who could be helped by psychological treatment methods but associate it with psychiatric institutions where crazy people are treated.
Dr L. Umnus
Warrington

I am making this comment anonymously in order to maintain my relationship with my friends with ME. I have absolutely no doubt, from personal experience, that ME, whether or not it originates in something physical or psychological is perpetuated by a self-obsession with the condition itself. Your programme showed parents that pandered to or even encouraged this behaviour in their children. I can well understand doctors frustration at the perpetuation of the vicious circle, however well intentioned. If the parents are misguided, then truly they are harming their children.
Anonymous

Intelligent, informed, but perhaps a little reserved. The history of the medical cover-up of ME goes back to 1956 at least (The Royal Free Hospital outbreak). Eight people are still bedridden from that outbreak. Tonight's Panorama scratched the tip of an iceberg that perhaps should have been blown out of the water? Conclusion: one small step in the right direction. (But Panorama will not set the world on fire with such small steps).
Del Kennedy
Southampton

To be told we will manage if we push ourselves is torment. I really feel for all those whose doctors are so cruel. How do we heal the pain? Thank you BBC for your eye-opening account.
Sonia Paget
Theydon Bois

One of the most shocking and disturbing documentaries I have ever seen. Simply can't believe that such draconian attitudes could be held today, especially by a consultant practising at such a prestigious hospital. I do hope that the Panorama programme will provoke some reaction generally with the medical profession and prevent such horrific treatment being experienced by more children.
Dianne Magrath
Brough, East Yorkshire

I thought the Panorama programme tonight was very good. It is great to know that a voice is given to such cruelly disaffected people and that people who are wrongly in positions of seemingly invincible power can be exposed so effectively...well done
Iain Mckinna
Edinburgh

I am 16 and am still recovering from ME, which I was diagnosed with 6 years ago. I have been lucky and from the start I was supported by both my family and doctors. It was never suggested that I should go for psychological treatment and instead rested at home when I needed to, gradually building up what I could do. Now I am back at school almost full time and am able to take part in extracurricular activities including sport. I believe that this is entirely due to the way I was treated and that had I been forced to take exercise when I did not feel I could I would not have recovered. I learnt to listen to my body and to judge when I had over exerted myself, rather than having someone else make that decision for me. I would urge all fellow sufferers to have faith in themselves and all parents to trust their own judgement and to listen to their children.
Alexander Harris
Bridport

I was horrified to see how psychiatric treatments were enforced by some doctors. As an adult sufferer of ME for the past 7 years, I consider I had a lucky escape from the more extreme approaches to this soul-destroying condition. I would not rule out Cognitive Behaviour therapy, as long as it is balanced by an attempt to alleviate the physical symptoms through medication or holistic means, because it is a structure which allows sufferers to find their own level of endurance. To force children into a purely physical regime, however, surely overloads their bodies at a time when the natural biological processes of puberty are already creating complications within the patient. Add to that the pressure to complete educational parameters within set time limits and children are being put under extreme stress before any consideration is made of their physical limitations imposed by ME. I admit I was surprised no mention of these external factors was made during the course of the programme.
Annaliz Woolston
Camborne, Cornwall

I am only 13 but I think the non-research into M.E for children as well as adults is terrible. To be told they can do nothing about my pain and suffering a freighting for me because I can't do anything about it. All my friends do all sorts of things but I am stuck at home feeling the way I do. Just thinking about not getting better soon makes me feel depressed a lot. So please Tony Blair do something for all 125 thousand children in this country suffering with M.E do something about it, for our sakes.
Sarah Leus
Pyrford

I am really pleased that the BBC gave this coverage. So many people do not understand that Chronic Fatigue Syndrome exists. In my opinion, I would have liked to have seen more experiences of families whose child or children have suffered from this. I am interested to know if there is a follow up programme!
Lynne Allan
Bathgate

I was appalled at the treatment these children had received at the hands of the draconian Doctors unproven methods. Yet again the social services have shown how inexperienced they are in understanding situations of a compassionate nature. In my opinion they should be brought to heel in no uncertain terms and these Draconian Laws should be abolished immediately.
Mr T.A. Hart
Gloucester

For ME sufferers and their carers there is a support list, MECHAT - To join, send an e-mail to LISTSERV@LISTSERV.AOL.COM saying Subscribe MECHAT-L Firstname Surname For a political ME discussion list, MEactionUK - To join, go to http://www.onelist.com/searchlist.cgi?searchval=MEactionUK
Veronica Jones
Coleford

It is wonderful to have Panorama focusing on M.E. and its treatment. It's incredible how medical treatment can be so behind the times, and down-right cruel on occasions. Surely with an illness where there is so little research, why can't people work on the basis that it's the sufferers and carers who have the greatest insight into the illness and how it could be treated (because they are living and managing it day-to-day).I would like to send my very best wishes to everyone suffering with this terrible illness and their families and for raising awareness of M.E.
Isabel Frenzel
Barlow, Dronfield

The facts produced did not come from a random sample of families with an ME sufferer, but rather from a support group, and one which it was acknowledged in the programme (though not overtly) is strongly against a psychological view of the disease. Of course their figures will support their side of the story.
Will Howson
London

I have worked in Social Services for most of my working life, part of that in later years as an Approved Social Worker under the Mental Health act. Whilst there can be psychological effects they are as a result of, not the cause of M.E. It is time the Medical profession got its act together and acknowledged that there is such a condition and educate doctors in the diagnosis of M.E.
Norman Ellis
Accrington

I feel so angry. People with M.E. are very poorly physically. Why is it that Psychiatry can not see this? Psychiatric hospital wards are disgraceful at the best of times and are totally inadequate for anyone who has any serious physical illness of any sort. This programme not only showed up the low standards of care for people with M.E. but also the terrible standard of care given by some Psychiatrists to those with Psychiatric problems. I think that we should spare a thought for anyone who has a mental illness who also is unfortunate enough to get M.E. as well. God Help them, they have no chance at all of being heard, believed, helped or rescued. Psychiatry certainly has a lot to answer for.
Pam
Milton Keynes

To the young man who cannot be named: I and thousands of other sufferers believe your illness is real and physical - not psychological. There is help out there. We recognise your pain because we feel it too and we are surviving. Talk to Action for ME and The ME Society. Remember depression is a symptom of your illness and not the cause. Think positive - it's not a pain killer but it does help. Believe in yourself because you are right.
Lesley Strzalko
Bolton

I was most impressed with the sensitivity and approach to tonight's program. I'm almost 18 and have had ME since I was 15 which has resulted in my withdrawal from school, the necessity for a wheelchair and the requirement for walking sticks now for short distances. I know how poor awareness of this debilitating illness is and it is good that a more recent program has been produced which shows that it is NOT all in the mind. I thought the children were very eloquent and spoke very well about their experiences. It would be a good idea to think about producing an update programme, this time, more about the illness itself. People say: "Oh ... that's when you're tired isn't it?" and are very sceptical. They can't understand how it can be impossible to move ones legs etc. It's not because of the fatigue or even the pain - the limbs simply don't work! Good health,
Tamsin Douglas
Salisbury

Its time that more money was put into research into what is a physical illness. My wife has suffered for 10 years with this illness. The medical profession can offer no cure and sufferers are hounded by the DSS trying to stop benefits they are entitled to. This process can make the illness worse. Most people who get ME were active people with a zest for life. The country would save money in the long term by funding research NOW. It is a scandal that an illness that affects so many people has no government funded research. Overall a good programme. I hope it will wake someone in the department of health up.
Brian Gilmour
Wyton Cambs

I was struck by the absence of reference to any of the substantial body of published research on chronic fatigue and its treatment. Your programme repeatedly asserted that there was "no evidence for psychological treatments for chronic fatigue". This is false. In a couple of minutes I have identified two systematic reviews of the published research on psychological treatments. Yes - they refer to adults not children. (There are no studies on children) Yes - they do not endorse in-patient treatment. But they clearly support the role of cognitive behaviour therapy.

Price JR, Couper J. Cognitive behaviour therapy for chronic fatigue syndrome in adults (Cochrane Review). In: The Cochrane Library, Issue 3, 1999. Oxford: Update Software.

Best L, Stevens A . 1996. Cognitive behavioural therapy in the treatment of chronic fatigue syndrome. Southampton: Wessex Institute for Health Research and Development.

There is, however no evidence for "distraction" as a therapy. There is also evidence that avoidance of exercise is associated with a poorer outcome in chronic fatigue. Indeed this is one of the things which cognitive therapy is supposed to challenge.

Deale A., Chalder T., Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. Journal of Psychosomatic Research 1998;45(1) Spec No:77-83.

While I appreciate that it makes a less interesting story, it is generally nonsense to suggest that there are "purely physical" illnesses and "purely psychological" illnesses. Every illness has physical and psychological manifestations - depressed people get weight loss, loss of energy, sleep disturbance and increased sensitivity to pain. People with infections or chronic inflammatory diseases get low moods, loss of appetite et cetera. Persons with asthma and epilepsy lose their confidence. Psychological therapies help with many physical illnesses (e.g.: asthma, brittle diabetes, back pain) and physical therapies help with many psychological illnesses (e.g.: drugs for depression). If we all acknowledged this we wouldn't get into such difficulties over chronic fatigue.
Tom Marshall
Banbury

In reply to Tom Marshall he says: " I was struck by the absence of reference to any of the substantial body of published research on chronic fatigue and its treatment". My sentiments exactly -- but it wasn't primarily a program about medicine or science, it was a programme about civil liberties, abuse of trust and power, and the arrogance, ignorance and sheer tunnel-vision within the medical profession, something it sounds like you *would* have difficulty in grasping, even after such incontrovertible stories of inflicted suffering. Perhaps you would care to let us know what your so assured credentials are? (I'm just a sufferer BTW). You say "Your programme repeatedly asserted that there was "no evidence for psychological treatments for chronic fatigue". This is false." -No, but your own observation of such is false. If you'd listened, you would have found that Dr Franklin actually said: "In some cases the psychiatric programme of graded exercise and cognitive behavioural therapy can be helpful. I don't deny that in some cases it can be helpful."
Mike Neillands
Edinburgh

Thank you for a programme which took ME/CFS seriously. I would like first to respond to the criticisms of one viewer who has listed research papers that show the benefit of cognitive behavioural therapy. Yes, there is evidence that CBT can help adults with this illness and I, for one, heard this mentioned on the programme. That does not mean, of course, that ME/CFS has a psychiatric cause. Some adults become depressed as a result of falling victim to a chronic disabling illness and there is no surprise in that. CBT can help those people come to terms with their negative feelings about their illness. There is no evidence of any sufferers of ME/CFS being depressed prior to their illness. There is no evidence as far as I know that a more general psychiatric approach to treatment is beneficial. Perhaps children cope with illness better than adults and this is why CBT is not beneficial to them? There is evidence that forcing patients to exercise beyond their limits only causes a degeneration of their situation as happened to the boy who could not be named. 'Pulling your self together' (a rather Victorian attitude to treatment, don't you think?) simply isn't the answer. As was said at one point, there are still some doctors who do not believe there is any such illness as ME/CFS. The DSS seem to employ most of them to review disability claims by sufferers. Perhaps that could be the subject of a Panorama in the future? It is not just children with ME/CFS who have been abandoned by the system. Even wheelchair-ridden patients are not legally entitled to Orange Badges!
Alan Williams-Key
Bristol

My daughter was an inpatient on Mildred Creak Unit (MCU) from the beginning of August. I feel great sympathy with the parents interviewed today , but I am appalled at the insensitivity towards the staff on the unit who do a brilliant job. Your programme did not actually praise the work done by the staff who are all mental health trained at GOS.
Corinne Ruck
Bushey Heath

The programme was very disturbing to my family and myself; it brought back memories of our own daughter's illness. We went through the same type of, for want of a better word 'treatment ' by the doctors at Great Ormond Street Hospital. We were lucky in that our Daughter was not committed to the unit that was shown. The problem with our Daughter seems to be a Hormone one; this is now being treated by Dr K Dalton with some success. I have detailed notes on the illness of my own Daughter and would be more than happy to expose the shortcomings of Great Ormond Street Hospital.
Martin Levett
Uxbridge

My M.E. followed a severe bought of flu, and knowing children as I do I know they bounce back quickly from illness if they can. My heart goes out to the children and parents suffering.
Maureen Lynas
Saltburn

I have had both glandular fever and surgery and recovered quite quickly from both. Getting over ME/CFS is nothing like either. Only by pacing myself have I made any progress - NOT by forcing. When are EXPERTS going to start listening to the sufferers? They are the ones who give us the psychological problems.
Jon Mair
Handforth

I have just finished watching tonight's Panorama and could not believe that in this time children are treated like that. I am a children's nurse and feel I know little about ME not working in that area of Medicine. I also feel sad that the Medical profession can think so little of people's rights, and think they have the right to over rule a patient's and parents decisions. I will continue to watch Panorama as it is informative and an interesting watch.
Wendy Bramley
Hull

My daughter, who will be 18 next week, has had ME for the past 2 years. No one who has been through this illness can doubt the pain and suffering which all family members, as well as the sufferer themselves, have to go through. One of the main torments, and possibly just as insupportable as the worst of ME's physical symptoms, is the mistrust, ignorance and misunderstanding of the illness itself, either by the education authorities, friends or the medical profession.
Lynne Kersh
Borehamwood, Herts

I am appalled at the programme and treatment of children with M.E.I have suffered with M.E. for 8 years, it is bad enough being ill without Drs thinking you make it up. It is a very difficult disease to live and cope with. You are so ill for so long it is hard not to become depressed and have that on top of M.E. but that treatment can only cause depression in children who are so ill. I believe graded exercise could help in some circumstances but surely it can only be done with the agreement of the patient and the support of the family.
Doug Wright
Shifnal

Congratulations on your programme's portrayal of the abuse of child M.E. patients by their doctors/social workers. How many more years will we/they have to suffer?
H.Paget
Theydon Bois

Thanks for doing this programme. It's great that you highlighted these extreme methods which some use in the medical profession. However, I think the problem goes deeper than just a few extreme cases; many people with ME - adults included - have been treated badly by doctors, which can end up making the illness worse and harder to bear - I'm speaking from personal experience - and I think some of the problem lies in doctors having too much power and easy respect from people in general; I have been quite disgusted at certain instances of arrogance and deliberate provocation of theirs'. Please keep on with this issue until the situation improves.
Anna Wood
Leuven, Belgium

I Thank you for being the first television programme to seriously try to 'tell it how it is'. Carolyn

I got ill in 1988 at 14 years old, eventually I was diagnosed as having M.E (CFS). In the process I was labelled by a consultant as a school phobic, hormone unbalanced hysteric and threatened with an exercise till I dropped program to "prove that it was all in my mind and I could really". Fortunately my parents as teachers were able to get the authorities to provide me with home tuition and my G.P to remove me from the consultant's care. I'm now 26 live independently but am still too ill to work or have a normal social life. Men like Dr Prendergast scare me still. As if it wasn't bad enough for these children to be so ill that their entire world collapses, people question and claim it is a case of making yourself get up and carry on. I've had M.E for almost 12 years, if I'd known then what I know now I am convinced I would be leading a normal life. Instead I pushed myself to battle on and fight the illness and became so severely ill that I was in and out of bed for over 5 years! After having had the illness now for 7 years, at varying degrees of severity I can only say how grateful I am for a supportive family, doctor and consultants!! Surely more spending needs to be spent on an issue that affects over 150,000 people in the UK alone!!
Sara McCullum
Ipswich

At long last, this deplorable situation has been aired on national TV. However, for any parents of newly diagnosed children, advice on where to go and who to be referred to would have been helpful. Many families are desperate and the programme did not offer a glimmer of hope. There IS excellent advice available if you know where to go.
Colette House-Chair MEA N.Herts GP
Hitchin

Moderator comment:Related Web site links to organisations with fact sheets and helplines can be found on the Panorama Sick and Tired page

An horrific programme but fascinating. I (a 52 year old male) was pensioned off from teaching with CFS. (Hurry!) No mortgage and £12000 index linked for the rest of my life!) I felt for those kids. My symptoms are similar, (but symptoms change weekly) not as nasty . how much worse for a child? I'm a very experienced teacher. (Physics in secondary schools)I know CFS. Can I help? Can I educate? Can I talk to people?
Tony Rothwell
Bradford

I was horrified to see how psychiatric treatments were enforced by some doctors. As an adult sufferer of ME for the past 7 years, I consider I had a lucky escape from the more extreme approaches to this soul-destroying condition. I would not rule out Cognitive Behaviour therapy, as long as it is balanced by an attempt to alleviate the physical symptoms through medication or holistic means, because it is a structure which allows sufferers to find their own level of endurance. To force children into a purely physical regime, however, surely overloads their bodies at a time when the natural biological processes of puberty are already creating complications within the patient. Add to that the pressure to complete educational parameters within set time limits and children are being put under extreme stress before any consideration is made of their physical limitations imposed by ME. I admit I was surprised no mention of these external factors was made during the course of the programme.
Annaliz Woolston
Camborne, Cornwall

I am a currently improving ME patient. A fellow of the institute of Directors and Director of two companies. As a patient who first had ME at 18, recovered after 2 years, worked for the next 30 years then relapsed after virus, I thank Nigel Speight for his intelligent approach.
Linda Morgan
Henfield

These people need help, not 'experimenting' on by different voices of medical opinion.
Tony Preston
Plymouth

Working as a psychiatric nurse in child and adolescent mental health, I found your presentation of this disorder to be most biased. In particular this was evident in the presentation of this disorder amongst the 'middle classes'. Whilst you denigrated a psychological approach, you did not offer a sound physical/medical approach to treating this disorder. As a discerning viewer, the portrayal of this disorder will cast a shadow over any further Panorama programmes I view with regard to their validity.
Sandra Barker
Newcastle upon Tyne

Having watched Panorama on the subject of ME and children I can only say I am horrified. I was diagnosed with ME about eighteen months ago after having spent two years visiting the doctor with small niggling complaints and being told You're fifty now; what do you expect? 'I had been lucky; I could not remember my previous visit to the doctor so when my eyesight started to fail, I felt constantly tired, my joints gave trouble, bad back and sleepless nights, not to mention the headaches, I could only assume the doctor was right. ¿You're fifty now; what do you expect? Obviously this problem only affects males of fifty plus. It's different in children. They have mental problems. If you're a young male, you're just loafing. If you're middle-aged, it's a mid-life crisis. Perhaps the best explanation was given to me only the other day by an ophthalmologist. He said, ¿ME is actually the dustbin where they put all the complaints that none of us understand. Come back in a few years time and like the recycle bin in Windows we may have emptied out some of the trash.' Wouldn't it be far more friendly if the doctors could only admit ¿We don't know, but we won't damage you in our experiments.' My experience was the pills. Take them and pass out for two days. No symptoms, no life either. Let's just have no experiments and get the experts to admit WE JUST DON'T KNOW.
Alan Wilson
SALTASH

I was dreading such an influential programme covering the subject of M.E. which has devastated my life for the past 6 years. Surprisingly, the M.E. story was told like it really is and sufferers were given more air time than the psychiatrists (for once!). I would also like to say 'thank you' to the BBC for referring to the disease for the most part as M.E. and not Chronic Fatigue Syndrome, which has become an umbrella term for anyone with unexplained fatigue. Now we only need a programme which deals with M.E. as the physical disease it is, with no mention of psychology, and I'll finally feel we are getting somewhere.
J Knight
Penrith, Cumbria

As a 25 year old M.E. sufferer who's just forced herself to re-live the nightmare she was put through in the hands of the NHS by watching "Sick and Tired", I have one thing that must be said... THANK YOU!!! It really is long past time the extreme emotional and physical distress (also known as treatment by "specialists") was exposed. I know that I will bear the emotional scars for years, but to know my suffering was not an isolated case quite frankly makes me sick to the core. What was shown on that programme was nothing short of child abuse.
Rachel East
Exeter

What was particularly sad about the abysmal treatment of both children and parents in this programme is that nobody recognised that ME or chronic fatigue is usually caused by a virus, and that this can be eliminated from the body by nutrients and herbal supplements.
John Googe
London

I found the content of tonight¿s programme disturbing. It is horrifying to think that the laws that are supposed to protect our children can be turned against their parents or carers, effectively labelling them as child abusers.
Petra Owens
Bedworth

This programme highlighted the differences in the medical approaches to treating a problem. I feel that the BBC was irresponsible in showing only one side of the coin. The programme should have shown some success stories if any along with selected worst examples. Investigative journalism at its worst!
Varghese
Coleraine

Frustration. As a 22 year old who has had M.E. (or CFS as it is often called) for almost 4 years I am so annoyed at some in the medical profession. I did not get ME as a child - I got it as a young adult studying at University. Psychological my foot. I had nothing to gain in pretending pain and extreme fatigue. Neither do these children!
Ruairidh D. MacRae
Glasgow, Scotland

I have a fianc_ Helen, who was officially diagnosed with ME in 1996. I can say, even with no medical training whatsoever, that I can easily prove to any doctor who wishes, that ME is a physical condition, and not a psychological one. I am glad to see a programme such as this be aired, and hope that the correct eyes and minds are widened because of it.
Christopher Boyle
Cheltenham

My daughter suffers with M.E. and we would like to thank you for your programme. Her consultant has tried to push her into psychological counselling and cognitive behaviour therapy despite our belief that these will not help. She is not depressed nor does her illness come from a psychological problem. We sympathise very much with other families who have been pushed/forced into this kind of treatment. We hope doctors will learn to appreciate the symptoms and needs of their M.E. patients.
Deborah
Ashford, Middx

My wife and I have just watched your programme about ME. We experienced the same problems locally with our son, who had a bout of ME following a series of viruses. We too had to fight the stigma of psychological illness.
Diane and Peter Matthews
Liskeard

The salient points here are that ME is a poorly understood condition that is a diagnosis left when all other possibilities are excluded, is probably multifactorial in its origins and symptom spectrum, and has no adequate treatment. The only things that any of these people are guilty of are arrogance and a failure to acknowledge their own ignorance!
Dr Steve Marson
Nuneaton

As a former Chronic Fatigue Syndrome sufferer, I was appalled to see children with C.F.S. being placed in psychiatric units. Before I was diagnosed with CFS, I competed as a Modern Pentathlete & worked as a Sports Development Officer, trust me if I could have got up & run I would have! When are people in the medical profession going to wake up & realise it is a physical condition, not in the mind. Come on this is the 90's, not the 50's.
Zara Trickett
Exeter

I watched this programme through the eyes of a psychiatric nurse and wondered what it did for the "stigma" attached to mental illness and how much existing stigma affected attitudes in the first place.....I also wonder at the relevance of the whole subject since CSF/ME/CVFS/ whatever you wish to call it is in fact more an issue of class and education level another example of what has been ignored for so long in the Black report. Would a kid from a poor background ever have made the programme?
Frank
Ayr

I am 15 and have a friend who suffers from ME. Although he was not made to do any of things in the program there was a lot of doctors who just he was being lazy and he couldn't be bothered. Children should stop being treated like 2nd class people because we are not!
Andrew Vandervell
Farnham

Thank you for your intensive reporting of tonight's "Sick and Tired." CFS and ME conditions are largely immune deficient disorders. One of the major causes is the numerous toxins carried in foods consumed by the patients.
Philip Dawes
London

It seems that many people in England suffer from some sort of chronic fatigue syndrome...could it be caused by environmental allergies as well? For instance, leaded gasoline, jet fuel, coal burning? This is an expensive illness and many managed care systems don't wish to be bothered because of the financial drain. We now know of three friends in England that have been "off the record" diagnosed with this ailment, but not officially because of fears of losing employment or future employment. Sad.
Pam Kramer Clackamas, Oregon





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