News in Brief

NEWS IN BRIEF

YOGA

Olivia 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 Findley Thanks to Hermes

RESEARCH NEWS

ME 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 & RIDE

Ring & 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 transport

Ring and Ride services operate throughout Greater Manchester and are booked through your local depot.

Tel No Manchester - 0161 223 6575

Bolton 01204 388500

Bury 0161 764 1999

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 PASSENGERS

Qualifying criteria for a Disabled Person's Railcard have been slightly extended as from 6th 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 difficulties

b. Be registered as deaf, or use an NHS hearing aid

c. Have epilepsy, and have repeated attacks even though you receive drug treatment

d. Receive Attendance Allowance

e. Receive Disability Living Allowance (at higher or lower rare for mobility) for one year or longer or at higher or middle rate for personal care

f. Receive Severe Disablement Allowance

g. Receive long-term Incapacity Benefit

h. Receive War Pensioner's Mobility Supplement

i. Receive War or Service Disablement Pension for 80% or more disability

j. 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 19TH

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 ENGINE

Everyclick, 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/meresearchuk

Become 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!

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

MASSAGE

Gloria, 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 SUPPORT

Do you live in the Wigan & Leigh area ? Do you suffer from CFS/ME & feelisolated? 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 whosuffer from CFS/ME, nor is there an organisedSupport 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 believethat 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 organisedSupport Group for the area.

So let's get talking.

To subscribe go to

or contact the list ownerat :

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.

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

STOCKPORT ME GROUP 11TH 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.