NEWS IN BRIEFYOGAOlivia has changed her holidays, so please note there will be no yoga the last week of August (28th) and 4th September - not last two weeks of August as stated in the flyers.

PROF FINDLAY - LIGHTNING PROCESS.Let me say from the start, it is not suitable for everybody.It is not appropriate for patients to be applying themselves for courses, unless it is through the specialist who is looking after them. There were a number of reports of major relapses, and real problems after this process. We are now measuring the response in a consecutive series of patients. Some do show excellent responses, and some do not. I think we are in a position to pick out those that are likely to respond.I would suggest that anybody who books a course for the Lightning Process, seeks advice from the specialist who knows them, as to whether it is appropriate for them.

Leslie J FindleyThanks to Hermes

RESEARCH NEWSME is renowned for being a strange business, every patient and every doctor having their own, strongly held opinions about what it is, where it comes from, and what the treatments and long term outcomes should be. Very confusing. I came across this snippet of information recently which I thought members might be interested in.

At a recent conference, Dr Kenny De Meirleir, a Belgian medical researcher and ME specialist renowned for his work on immune dysfunction in ME, described his belief that patients with this illness fall into specific group profiles or sub-groups.

Group 1 (15 - 20% of patients) have high levels of Low Molecular Weight Enzyme RNaseL and elastase, low levels of protein kinase (PKR) and uric acid, and low to normal levels of nitric oxide. He reports that spinal taps indicate elevated levels of lymphocytes and proteins in the spinal fluid and there is increased pressure on opening the lumbar puncture. These patients could have a chronic low-grade viral infection and inflammatory reaction in the brain. Many micro-organisms are associated with this profile. Heavy metals, pesticides and other triggers may also be involved. Approximately 20% of this group has low-grade Herpes Virus (HHV6A) encephalitis.These patients notably have neurocognitive problems such as confusion and impaired concentration and memory. The fatigue experienced originates in the brain, but pain is not a major feature for this group of patients. Some of the symptoms of this group are similar to those of MS patients.

Group 2 (10 – 15% of patients) have very high levels of Low Molecular Weight Enzyme RnaseL and elastase, with high levels of protein kinase activity. They have severely low natural killer cell activity and very low serum uric acid levels. These patients are severely ill with bacterial infections originating from animals such as pets, rodents and tick bites etc, and tend to have severe bowel problems. He states that the gut is an important part of the immune system because 70% of immune cells are in the digestive tract. When a patient has 'leaky gut syndrome' as many of us do, the gut has become permeable and foreign proteins enter the blood and tissues (where they should not be) and cause inflammation. Dr De Meirleir routinely tests for 12 pathogenic gut bacteria.

Group 3 (60 – 70% of patients) comprises the largest group of ME patients. He describes this group as similar to Group 2 but with less severe symptoms. They have generalised pain caused by dysfunction in the part of the brain which process and interpret pain, and central nervous system symptoms are prominent. He feels that this group is mainly affected by gastrointestinal infections and bacteria of one sort or another in the blood.

His findings in terms of groups are very similar to those of research conducted by Dr Jean Munro and Dr Andrew Wright.By Sheila Darbyshire and Joan Crawford With thanks to Hermes

RING & RIDERing & Ride provide a door-to-door minibus service for people of all ages who find it difficult to use ordinary public transport.For example you may have difficulty - Getting to and from main public transport routes and service - Getting on and off public transport A fear or phobia of using ordinary public transportRing and Ride services operate throughout Greater Manchester and are booked through your local depot.

Tel No Manchester - 0161 223 6575Bolton 01204 388500Bury 0161 764 1999

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Before you can book your journey you must first contact your local depot, which will tell you if you qualify for the service. If you do, registration is simple, quick and free of charge.You may bring a friend, relative or carer with you and they do not need to be registered as a member.Fares – for a local trip the fare is 50p a journey if you have a GMPTE concessionary permit or £1 without. People with a GMPTE free travel pass travel free.For further information contact GMATL, 9 Portland Street, Piccadilly Gardens, Manchester M60

NEW RULES RELATING TO RAIL TRAVEL FOR DISABLED PASSENGERSQualifying criteria for a Disabled Person's Railcard have been slightly extended as from 6 th September 2006. This means that more people will now be entitled to obtain these very useful discounts when travelling by train.To qualify for a DPR you must meet one of the following criteria:a. Be registered as having eyesight difficultiesb. Be registered as deaf, or use an NHS hearing aidc. Have epilepsy, and have repeated attacks even though you receive drug treatmentd. Receive Attendance Allowancee. Receive Disability Living Allowance (at higher or lower rare for mobility) for one year or longer or at higher or middle rate for personal carea.Receive Severe Disablement Allowancef. Receive long-term Incapacity Benefitg. Receive War Pensioner's Mobility Supplementi. Receive War or Service Disablement Pension for 80% or more disabilityj. Are buying or leasing a vehicle through the Motability scheme.A DPR will enable you to receive one-third off most types of rail ticket.You can also obtain significant discounts at Holiday Inns and other hotel chains - as well as other types of financial benefits.A one-year DPR costs £18. A three-year card costs £48.For more information on DPRs, as well as other disabled facilities when travelling by train, consult the latest edition of 'Rail Travel for Disabled Passengers' - published by National Rail. With thanks to Hermes

GROUP SOCIAL MEETING JULY 19 TH For our July meeting on the 19th, we had a very special surprise in store for a very special lady! Alice, who has been a member of the group for a long time turns 80 on August 26th, so we’d thought we’d throw a little a party for her at the July meeting as it was a social evening.

We were going to have a necklace making demonstration, but unfortunately Vicky was unable to come, we will try and re schedule this for those who want to take part.

At the start of the meeting, Elaine (my brave sister-in-law!) - Who did a tandem sky dive to raise money for the group brought a couple of pictures to show us and thanked us for our support. We presented her with some flowers as a thanks for raising over £300 for the group. Well done!

We then mentioned that it was someone’s 80th birthday next month and presented a cake, a bouquet of flowers and a balloon to a very surprised Alice! Her friend pat very cheekily put a re-lighting candle on, so Alice couldn’t blow it out! Pam had also made some lovely fairy cakes for us all and we all went home with a piece of Alice’s cake.

COMPUTER USES - SEARCH ENGINEEveryclick, the search engine (i.e. like Google) that gives 50% of its profits to charities according to the number of clicks the charity supporters make, have just announced that the ME Research UK share for January was £133.35, bringing the total since last August to £1186.98. If everyone did just a couple of extra clicks each day the monthly donation would double as it has averaged at less than 2 clicks a day per supporter.

So, if you haven't joined already, please go to www.everyclick.com/uk/meresearchukBecome a supporter, make it your home page and do some clicks each day, and spread the word among all your friends and relations! Do please spread the word as there have only been 7 new supporters since November and when you think of the number of ME sufferers and the number of contacts everyone has there is tremendous potential!

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ME biomedical research is not a popular cause in the eyes of the general public, so if we and our friends and families don't do our best to raise funds, certainly no-one else will! I used to feel guilty asking friends to support ME research as it felt like asking for something for myself, until I realised this and thought how many other ME sufferers there are, many only youngsters! With thanks to Hermes

Many thanks to those who continue to shop at Amazon.co.uk via our website - www.mesupportgroup.co.uk as we get a commission on purchases. Don’t forget, when buying things, please go via our website to Amazon’s site

MASSAGEGloria, one of our members from Leigh is kindly offering massages to our housebound members and their carers. She has a diploma in Indian head Massage and Holistic Therapies and feels it has helped her a lot. Indian head massages and back massages are £15 and full body massages are £18 to cover materials and petrol. She can get to Bolton and Bury - if interested, please phone her on 01942 875 531.

INTERNET SUPPORTDo you live in the Wigan & Leigh area ? Do you suffer from CFS/ME & feel isolated? Are you on the Internet?  (Or do you have access to the Internet?) If so, help is at hand!   There is a brand new Yahoo support group for people who live in the Wigan & Leigh area. Go to http://health.groups.yahoo.com/group/Wigan_Leigh_ME/ At the moment the area doesn't have any services for people who suffer from CFS/ME, nor is there an organised Support Group.  We need both!In Bolton the Support Group was instrumental in putting pressure on the area Health Authority to provide sufferers with a service.  Now Bolton & Bury residents have their own Neurological Rehabilitation Service but Wigan & Leigh do not.We believe that has to change, but the first step is to find all the people in the Wigan & Leigh area who suffer from CFS/ME & to put them in touch with each other.  The Yahoo Group was conceived to do that, maybe leading to creating an organised Support Group for the area. So let's get talking.

To subscribe go to Wigan_Leigh_ME-subscribe@yahoogroups.comor contact the list owner at : Wigan_Leigh_ME-owner@yahoogroups.com

THIS REALLY HAPPENED IN FLORIDA!An elderly Florida lady did her shopping and, upon returning to her car, found four males in the act of leaving with her vehicle. She dropped her shopping bags and drew her handgun, proceeding to scream at the top of her lungs, "I have a gun, and I know how to use it! Get out of the car!"

The four men didn't wait for a second threat. They got out and ran like mad. The lady, somewhat shaken, then proceeded to load her shopping bags into the back of the car and got into the driver's seat. She was so shaken that she could not get her key into the ignition. She tried and tried, and then she realized why, .. it was for the same

reason she had wondered why there was a football, a Frisbee and two 12 packs of beer in the front seat.A few minutes later, she found her own car parked four or five spaces farther down. She loaded her bags into the car and drove to the police station to report her mistake. The sergeant to whom she told the story couldn't stop laughing. He pointed to the other end of the counter, where four pale men were reporting a car jacking by a mad, elderly woman described as white, less than five feet tall, glasses, curly white hair, and carrying a large handgun.No charges were filed.Moral of the story: If you're going to have a Senior Moment, make it memorable.

******************************************************THANK YOU to the readers who wrote in to give us their appreciation of this newsletter

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Thanks to Interaction

STOCKPORT ME GROUP 11 TH MAY 2007 LECTURE BY PROFESSOR MALCOLM HOOPER

Once again, several of us went over to Stockport, this time to listen to their excellent guest speaker, Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at Sunderland University. He is also medical adviser to the Gulf War Veterans Association.

With a background that is paramedical, he did his first degree in pharmacy and went on to do his second degree in the development of drugs and their action. All his working life has been spent in looking at drug design and development, including drugs for tropical diseases. His expertise lies in drug design, pharmacology, chemistry and some medicine. He has knowledge of how the body’s systems work.

Professor Hooper got involved with Gulf War Syndrome and the Gulf War veterans because of his expertise, and after giving a talk to a very prestigious group about GWS, he was contacted by a lady called Margaret Williams of ME Research, who said “you are just the person to write my legal report” and that was how he became involved with ME.

He gave us an overview of Gulf War Syndrome and said that the Gulf War was the most toxic in Western history as the soldiers were given immunisations, insecticides, nerve agents etc. to protect them from any possible attack from chemicals, bio-weapons etc. This resulted in the Gulf War veterans being exposed to over 40 different toxins. As is well documented, large numbers of veterans have since become ill, but were told it was all in the mind by all the authorities, as experts couldn’t explain it.

Professor Hooper then went on to link ME with other unexplained syndromes i.e. organophosphate poisoning and multi chemical sensitivity, and said that all these syndromes are multi system, multi organ and very complex. Illnesses that are unexplained include ME. These illnesses all have features in common which are problems with the nervous, cardiovascular, immune, gastrointestinal, respiratory and the endocrine (hormone) systems, adding that IBS and gut problems are very common in ME.

A major problem is that when you go to the doctor and describe all the symptoms you have, and they do all the tests, they come back as negative. This is because these tests are routine tests, not specific tests e.g. thyroid tests among one, therefore they say that it is psychological or somatisation, so you get a psychological diagnosis or a diagnosis of depression.

This now makes it easy for them, as it is now your problem.

There have been many studies and research projects which have indicated that ME is not a psychiatric condition, but there was a study done in the 1960s on the Royal Free Hospital outbreak of ME in the 1950s by McEvedy and Beard, and this study concluded that ME is a psychological condition. Dr. Byron Hyde from the Nightingale Foundation in Canada has established that this study was flawed.

Professor Hooper compared the symptoms of ME to those shown by people suffering from other illnesses including HIV/AIDS and MS, which he says proves that ME attacks the nervous system and is very similar to viral illness. Historically here again people said that in MS (mainly women are affected) the women were hysterical and this is an insult that has been laid upon women and it is quite wrong. Now of course MS is understood and it has been proved it is a physical illness.

He then showed us graphs of general health scores of people who were well, those suffering from GWS, those suffering OP poisoning and those suffering from ME. This is part of a research project done by Dr. Vance Spence in Scotland, who, although very ill with ME himself, works for ME Research (MERGE). The data was collected by questionnaires and the scores were out of 100. The questions were about physical functioning, social functioning, role limitation, emotional role limitation, mental health, vitality, pain, physical health problems and general health. These are well-used documents and are widely accepted. They assess overall health. He showed us the lines of the graph for normal healthy people whose score would be around 90 out of 100 for Mr Average or above for Mr. Super fit. For ME sufferers the lines were very low except that they reach almost normal in the questions about emotional and mental health. This proves that ME is not a psychological problem. The scores also showed that the Gulf War Syndrome sufferers were very, very ill. Once again Professor Hooper stressed that ME is a whole body illness affecting many systems.

Professor Hooper described other research work done by various people. John Richardson, who has done a lot of work into chemical toxicity, also did some work on differentiating between depression and ME by looking at the blood flow to the brain. These studies show that there are tests to show that ME is not

depression. Leonard Jason, a researcher in the US, has studied people with both clinical depression and ME. Jason says that the commonly used Fukuda definition of ME is not really adequate. Dr. Byron Hyde in Canada says that it doesn’t necessarily have to be started by bacteria, although it often is, but it can be triggered by chemicals. He has published his definition of ME, which is in line with the Canadian Consensus and he stresses that it is important to get an early diagnosis particularly in the case of children because of the implications and difficulties when the child cannot attend school. Dr. Hyde did an enormous amount of work in 1992 on ME and 74 chapters were sent to Parliament in reports, but they were never read, and were later found discarded in a cupboard.

Professor Hooper told us of a book called CFS - A Biological Approach, edited by Patrick Engelbienne and Kenny de Meirleir. This is quite a technical book, but it describes how in a viral infection the R-Nase L pathway is affected. This mechanism is involved in viral infections and basically the cell turns on a programme to destroy the virus (this causes inflammation) and at the same time it switches off the cell and it dies. This leaves the body with a lot of debris to clear. The virus may be long gone, but this mechanism is not switched off. Viruses that can cause this disruption include the herpes family of viruses, such as Epstein-Barr and Human Herpes 6 (HHV6). Kenny has looked at this R-Nase L response and there is a test for it’s malfunction, but it is very costly and not easily available. However, the test does show that there is a physical abnormality in that area. Bacteria carried by pets and animals e.g.Borrelia can also disrupt the R-Nase L function.

Professor Hooper said that there is a lot of confusion and deception around ME/CFS, and he does not like the term CFS as a title. It is not helpful nor is it accurate, and he is opposed to the use of it. A group of doctors led by Professor Anton Komaroff devised the name Chronic Fatigue Syndrome (CFS) and since then Professor Komaroff has said that “none of the participants in creating the 1988 case definition expressed concern that it would trivialise the illness. WE WERE WRONG”. ME is not fatigue, not chronic fatigue or deconditioning. It is not clinical depression. Professor Hooper says that the medical profession tends to classify bodily symptoms as mental health problems where conventional medicine is at a loss for an explanation. ME has been described by psychiatrists as a “bio psycho social model”, but Professor Hooper adamantly refuted this claim and said according to Neil McClaren, an Australian psychiatrist who developed the bio psycho social

model theory, this claim when applied to ME has no credible intellectual foundation, and was based on fraud and was a complete misunderstanding of the origins of the idea. Professor Hooper told us of a book by Margaret Williams called “Quotable Quotes About ME/CFS”. Copies are available from www.investinme or by post from Sue Waddle, 18 Claremont Gardens, Purbrook, PO7 5LL.

Once again Professor Hooper stressed that this illness is a multi system, multi organ, whole body complex biological illness, and in order to investigate it properly, it is essential to understand and sub-group the illness as some people have more neurological problems, some will have more cognitive problems some will more pronounced gut problems etc. Psychiatrists will, broadly, say that there is no need to sub group definitions, just lump them altogether under a broad umbrella term. An example of sub grouping is shown by Cheyney’s work and he made 3 sub divisions: -1 Infection. Caused by viruses, bacteria etc. Treatment by antibiotics.2 Neural. Caused by chemicals, toxins, and brain injury.3 Gastrointestinal. Gut permeability, poor digestion, immune activation, gut/brain axis dysfunction causes problems with detoxification and hypothalamic control.Treatment would be by the 4 Rs; to remove, repair, replace, and re inoculate.Professor Hooper then told us of a small study done in the US using Valgan-Cyclovir, which is a drug used to destroy herpes viruses, and which showed good results. Unfortunately, this drug is very expensive and not easily available.

Professor Hooper talked about the Canadian Consensus Panel Criteria for ME published in 2003. These are guidelines for diagnosis, tests and treatments for ME drawn up by a team of very experienced doctors in Canada and the US, involving thousands of hours of patient contact and investigation. This is the best available criteria around at present. Any doctor who has sight of these criteria cannot fail to make a diagnosis of ME, and recognise it as a physical illness. The whole document is very long, but the main diagnostic criteria include: -Fatigue - which is largely post-exertional malaise.Sleep disorders.Pain.Sensitivity to light and noise.Neurological and cognitive problems, and at least one symptom from 2 of the following categories: -Autonomic system - delayed postural hypo tension-

(can be checked by taking the patients pulse while sitting down, and then comparing it by taking the pulse again when the patient stands up), low plasma/low red blood cell count, vertigo/light-headedness, extreme pallor, IBS, bladder problems, cardiac arrhythmias, vasomotor instability.Neuroendocrine system - thermostatic instability, anorexia or abnormal appetite, marked weight changes, hypoglycaemia, and lack of tolerance to stress.Immune system - sore throat/tender lymph nodes, flu symptoms, general malaise, new allergies, sensitivities to chemicals, medicines, alcohol intolerance.

The Canadian Consensus is now published and is available for purchase. It is also on the Internet.

Professor Hooper told us he gave a presentation to the Gibson Enquiry, and met Dr. Gibson, who is one of the few MPs who have a background in science. Professor Hooper said at the enquiry that it is absolutely crucial that there is a good case definition and classification for this illness. What is it and how do we define it? He quoted the WHO definition of ME that it is a disorder of the nervous system. Professor Hooper told us the enquiry stressed the need for definition, causes and treatments, the need for better education of medical professionals, and the need for strong emphasis on the Canadian Criteria. He is not very impressed with the NICE Guidelines for treatment of ME patients, and many experts in the ME field agree with him.

Again Professor Hooper emphasised how there is a lot of confusion and deception around ME/CFS, and that he finds it abhorrent and unacceptable the description of ME sufferers as stressed and lazy people. Unfortunately there is still a certain amount of that attitude around. He showed us a picture of a lovely young woman called Sophia, who took a drugs overdose to commit suicide because of her illness and the lack of understanding and support from psychiatrists. Her family insisted on a post mortem and they found extensive (75%) inflammation of the dorsal root ganglia of the spine consistent with viral infection. ME is a persistent inflammatory state, it is an “itis” after all, and that the name “Myalgic Encephalomyelitis” is a true reflection of what is going on in the body.

Professor Hooper then went on to talk about some tests and treatments. The Canadian Guidelines document does outline tests, which can help to identify certain problems, and your doctor can do

some of these tests. There is often a problem with the thyroid hormones in ME and any possible hypothyroidism should be identified and treated. People with ME are often deficient in the mineral selenium. An antibody screen can be done to identify viruses, as enteroviruses are well known culprits in ME, and herpes viruses such as Epstein Barr can also be identified and treated with appropriate drugs. Enteroviruses are also well known causes of acute respiratory and gastro-intestinal infections and can trigger ME. There is also a test that measures oxidative stress, which is a well-documented sign of ME/ CFS. The Canadian document gives quite detailed guidelines to doctors on how to go about investigating a patient and Professor Hooper endorses this document. Unfortunately, the Medical Research Council is still not funding biomedical research and papers are still being published promoting the illness as a psychiatric disorder. Psychiatric diagnoses are leading to the wrong treatments being given, and even the NHS clinics can only offer counselling, GET and CBT type treatments as they can only operate within current NHS guidelines.

Professor Hooper outlined some treatments that are helpful and quoted some of the work of Dr. Sarah Myhill, who looks at supporting the heart as patients with ME equate with low-grade heart failure. She also treats patients to support the mitochondria, the energy powerhouse of cells, which are not converting food to energy as they should, and uses Co-enzyme Q10, L-Carnitine, D-Ribose, Magnesium and Niacin (Vit. B3). He also said that for anyone on antibiotic treatment, it is important to support the gut by replacing the good bacteria as inevitably, the antibiotics kill the good bacteria as well as the bad ones. He recommended the use of pre-biotics such as fructo-oligosaccharides as these are good for pro-biotics. He did say not to use too much of the lactobacillus cultures as they are too acidic. The substance Creon (pancreatic enzymes) is good for digestive support. There are treatments for fungal infections if these are a cause of some of your problems, and should be taken together with dietary support.

Professor Hooper finished by saying that there is hope, but there is still a lot of hard work to do. There were questions afterwards, and during this session, he said that Dr. Wright was “a good lad and is on the right track”.

It was a very enjoyable morning and we again stayed behind for an excellent meal at the Toby Carvery.

Pam Turner.

NEUROBIOLOGICAL DIFFERENCES FOUND IN M.E./CFSResearcher Paul Nestadt has undertaken a study of neuro-metabolites (the products of brain processes) in M.E., with a team of researchers led by Dr Dikoma Shungu. The work was funded by the CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) Association of America. The following report is taken from their website at www.cfids.org

"In an attempt to understand the neurobiological effects of CFS and to discern potential biomarkers for the illness, researchers used cross-sectional neuro-imaging to compare regional brain metabolite levels and to examine the association of the neurochemical findings with the symptomology of the illness.

"Studying metabolites involves looking at the unique chemical fingerprints that specific cellular processes leave behind. In particular this study examined the neurochemicals in the brain and spinal fluid for differences related to CFS and what that might suggest about the illness, particularly compared to disorders with demonstrated symptom overlap such as major depression or anxiety disorders.

"Using an MRI technology called proton magnetic resonance spectroscopic imaging, Shungu, Nestadt and their colleagues examined 16 CFS patients, 16 healthy controls and 16 patients with generalised anxiety disorder (GAD) - a condition marked by worry, fatigue and impaired concentration."

Energy disfunction"Regional brain metabolite levels were obtained, including ventricular lactate in cerebrospinal fluid, N-acetyl-aspartate (NAA), total choline-containing compounds and total Creatine (tCr).

"What they found was that ventricular lactate levels were significantly elevated in CFS patients compared to GAD patients (297% higher) and healthy controls (348% higher). CFS patients also exhibited significant elevations in NAA to tCr ratios in the occipital hippocampal region of the brain and other chemical variations in other brain regions. In all three groups, lactate levels positively correlated to levels of fatigue, and within CFS patients, specific neurochemical levels could be correlated to depressive severity.

"These preliminary results show that a significant portion of patients diagnosed with CFS have elevated ventricular lactate levels, potentially suggesting anaerobic energy conversion in the brain and/or mitochondria) dysfunction - the mitochondria being the energy conversion 'power plant' of a cell. Findings also clearly support a biological difference between CFS and neuropsychiatric disorders such as GAD. Additionally, marked differences in hippocampal glutamate appear to distinguish CFS patients with accompanying depression from CFS patients without depression. Thanks to Interaction

SENSE AND SENSITIVITY"One of the many symptoms of M.E. is increased sensitivity to noise and bright light," says Action for M.E. member and former consultant psychologist and researcher, Dr Jenny Watts. "When I experienced these sensitivities, I set out to investigate their effect on everyday life and see what help is available."

Gone are the days when I've come home after a late night disco and kicked off my shoes. With the onset of M.E. 14 years ago my lifestyle has changed. I used to love bright revolving spot lights and pulsating music. Now people playing their ipod on full volume and folk in cars pounding with the latest CD are my sworn enemies. After being bombarded by checkout scanner bongs in supermarkets, deafened by piped music at superstores and irritated by a cacophony of ring tones on mobile phones in pedestrian areas, you'd think that home would be a quiet haven. Not so.

Five years ago, I had a new neighbour. DIY started immediately, followed by a prolonged loft conversion

and recently, guitar playing. Then the property on the other side was sold. For the next two years, the new owner extended the kitchen, did yet more DIY and disturbed me with very loud rap music. My M.E. got considerably worse. I felt nauseous, shaky, got severe headaches and tinnitus. I couldn't sleep or keep to a pacing routine of writing, rest periods and time out. Even though I talked to the neighbours about M.E. the noise continued.

I took action and got support from a mediation organisation. The local authority environmental health department logged all noise nuisances and advised on acceptable times for doing building work and DIY. The police recorded all noise and followed-up with visits to the neighbours. The Citizens' Advice Bureau wrote to the local authority directorate about the nuisance and concern for my health. My MP also offered to intervene. An ASBO was served and warning letters were sent to the neighbours. Now my house is quieter as the police and local authority

continue to monitor any breaches.

Acoustic traumaMembers who contacted me via Action for M.E., by e-mail and post, report that noise is a major problem. Gail developed severe noise sensitivity when she was living in a maisonette. "A very deaf elderly lady upstairs had a TV/radio blaring through most of the day: from 6am to midnight," she explains. "The young man next door got home at 1 am, put his radio on, sang along, often collapsed and left it playing all night. On occasions he would do some DIY in the middle of the night." She says that the lack of sleep and constant exposure to noise has damaged her hearing. "My brain seems to have been rewired to hear noises as being much louder than they are."

Kay writes that she's very sensitive to any noise and hears sounds that others hardly notice, e.g. the hum from electrical appliances, gadgets, radio, CD player and central heating. When she plays scrabble the rattling of the tiles in their bag grates on her. Rose is the same. She can't bear a newspaper or book pages being turned by someone in another room. "The noise seems to enter my body and reverberate in my skull." On a self-catering holiday, she had to ask her husband to sit in the bathroom to read. "If I'm having a bad day, I can only speak in a very low voice as it echoes in my head."

Intolerance indicatorsFor Mary, noise intolerance is one of the most accurate indicators of her state of health. She can only listen to music when she is well. "When I start having to ask people to speak more quietly then I know that I need to rest." She avoids going to pubs or clubs and visits quiet cafes with friends; seeing them one-to-one, so that she doesn't get tired. Other members report that crowded staffrooms, open plan offices, loud traffic, church singing, some male voices and children playing cause tiredness and noise sensitivity. Monotonous news announcers and even just watching TV make some of them head for the mute button.

Jane says, "I've had noise sensitivity since a viral infection triggered M.E. The first things I noticed that made me want to scream were slammed doors and babies crying. I've since had problems staying in the same room where there are several people and more than one conversation is going at the same time. My brain can't cope with anything other than minimal audio input."

Effects of medicationSome people with tinnitus have taken Xanax and

report that there's been an improvement with noise sensitivity, although they sleep more. Others have found that Valium, valerian herbal tablets and GAGA from the USA have helped them cope with noise. Sarah, who has auditory nerve sensitivity and tinnitus, found Rivatril "dampened down the autonomic nervous system." However, members who have taken Sertraline (Lustral), say that for them, their sensitivity to noise got worse before they noticed any improvement.

Pat says that when she was taking it, any sound caused her to shut down completely. She describes when her brother was playing the organ in the next room. "I was standing in the middle of the kitchen and the noise affected me so much, it was all I could do to take one step to the kitchen counter, where I held on. I was shaking and my brain had closed down to the extent that I could only speak in monosyllables." She had to ask her mother to tell her brother to stop playing. When he did, she could think clearly and stand unaided again.

Block it out!Many people with noise sensitivity use masking aids. Wax earplugs mould to fit in the ear cavity and block out almost all noise. Foam or rubber ones are lighter and allow conversations but aren't effective enough for many people. However, some GPs don't advise the wearing of earplugs because they can cause infections, especially if they're worn for any length of time.

Ear defenders, which are used by pneumatic drill operators, block out 95% of noise but they're very bulky to wear and can't be used when resting. People who contacted me say that after a short time they start to squeeze the head causing a headache. They prefer noise-cancelling headphones because they can be combined with earplugs, which have a jack inside to take an earphone. Music can be played on an ipod to mask unwanted noise. Recordings of white noise or the sounds of a stream or rain were all suggested. To completely block out noise, a room needs soundproofing. The materials give a noise reduction of up to 61 decibels and are 9cm thick but can only be used in walls not close to adjacent windows.

Beth had great difficulty reading because the contrast of black and white was too disturbing. "All the words seemed to jump off the page at once and I couldn't focus on the phrase I was trying to read." She couldn't use her PC or watch TV. Overcast days were more difficult to tolerate than sunny ones. At an appointment at the Institute of Optometry, London, she had a thorough eye health examination and

colorimetry test. As a result, she was prescribed two pairs of blue-tinted glasses. One pair for general wear/watching TV, the other with prisms for reading/working on her PC. The glasses have made a big improvement with her vision.

Other visual problems are associated with rapidly changing scenes and alternating light and shade. Linda says that when she's driving and the sun is low behind trees lining the road, she has to look away briefly. "The problem occurs on a tightly curved entrance to and from a motorway where there are medium-sized trees close to the road. They seem to whizz by." She's noticed a similar problem when she's watching TV and there are car chases or rapid scene changes in the adverts.

Other members say that they can't cope with the flashy brightness of TV. They prefer desktop PCs to laptops because they are easier on their eyes and they can sit further away. Several can't bear the glare of table lamps in restaurants and shut their eyes when there is strobe lighting in theatres.

Shields and shadesWearing a brimmed hat or baseball cap, both indoors and outside, can help. Wraparound sunglasses cut out light, especially at the sides and they can be worn with prescription glasses. Glare shields have a similar effect. Some members prefer blindfolds and eye masks to shield their eyes. Others feel that silk, moulded and padded eye masks aren't as effective as the gel ones. These can be put in the fridge between uses and are practical when travelling. Cold flannels draped over the eyes and eye pillows are useful for rest periods.

In the home, low wattage and coloured light bulbs reduce glare and are easier on the eyes. Direct light can be reduced by fitting dimmer switches and dispersed by using up-lighter lights. Dawn simulator lamps may help you to acclimatise to light on waking as they come on gradually over two hours. Members with severe light sensitivity have installed window film, blackout curtain lining, blackout blinds or complete blackout systems, to reduce the amount of light in a room or make it pitch black.

For many people with M.E., sensitivity to noise and light restricts and isolates them. At home they have to wear earplugs, limit visitors and cut out or reduce light. This often causes domestic friction. In public they risk comment, even ridicule, if they're out wearing a hat and sunglasses on a dull day. Those who are able to have a holiday, request a quiet

bedroom, go equipped with aids and take blackout material. When the sensitivities are very severe, they are housebound.

Like other members, I now enjoy my peace and quiet. No more discos. For me, a night in, reading a good book or quality time working on an article, is a little piece of heaven here on earth.

Susan White, now recovering from M.E., talks about her experiences with light and noise sensitivityMy sensitivity to sound began a long time before I got M.E., at age 11, when I started to get insomnia and polycystic ovary syndrome. The sound sensitivity worsened with the onset of M.E. Fourteen years ago and I had to resort to using wax ear plugs to get to sleep and stay asleep, otherwise the slightest noise would wake me. During a particularly bad relapse when I was bedbound, even the sound of my three-month-old baby's breathing was almost unbearable. It felt as if it was a knife cutting through my brain.

Light sensitivity became a real problem too with the start of M.E. Watching TV or looking at a computer screen was sometimes impossible. I used to have to wear sunglasses when outdoors and during one bad relapse I had to lie in a dark room for several days.

Even now in recovery, I often wear a pair of ear defenders when noise around the home is a problem. I have to limit screen watching to an hour maximum a day otherwise I have tired, aching eyes that are more sensitive the next day. Something I have noticed worsen over the years is that bright lights at night, e.g. from street lamps or cars, appear to 'bleed' towards the edge of my vision. I still find sitting in a room and looking at the daylight through a window tiring.

My main advice is to withdraw yourself in whatever way you can from the source of the problem, either by going somewhere else, putting in ear plugs or doing what you can to change the situation.

About the authorAuthor Dr Jenny Watts was one of the people photographed by Sunday Times and Life photographer Terry O'Neill to feature in our 2006 campaign. Jenny collapsed across her desk at work in 1992 and was diagnosed with M.E. the following year. At the time, she was a consultant psychologist and principal research officer and head of assessment and evaluation in a local authority. Thanks to Interaction

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