Notices 2003

If you wish to put a notice onto the board, click the following:

Hello everyone

As the coordinator of the 25% M.E. group I would like to welcome all visitors to our notice board and to the WebPages in general. This service is an extension of the service that we are trying to offer to people with severe M.E., in this country and abroad and we sincerely hope that this proves helpful to many people.

We seek to firstly help and support those with severe M.E., plus speak out for the cause and plight of the severely affected in relation to greater recognition of the illness, but also to educate others about the dangers of some of the management and treatment that many M.E. sufferers have been subjected to over the years.

I hope that this service will be helpful plus a vehicle to portraying the real problems of the severe M.E. sufferer. Please let us know what you think and how we might try to strengthen our message to the appropriate authorities.

Best Wishes to all M.E. sufferers and their Carers

Simon Lawrence (co-ordinator of 25% M.E. Group)

Any responses / suggestions / queries via the Web Team

New Notice 09 / 08 / 03
My sister is very severely affected by M.E. She is extremely light and noise sensitive and lies in the darkness day and night. My sister is also completely bedridden i.e. 24 hours a day, unable to enjoy any activity, like some other sufferers who can do little activities from time to time. This is so painful for me and my family to observe. We have established contacts with several other sufferers or carers, but have not come across any sufferer like my sister. We feel very alone, and it would give us reassurance if we heard of other sufferers similar to my sister. My family feel so concerned and we do not know what we should do to help my sister's light sensitivity and other symptoms improve. If you know of anyone who is very light sensitive as well as the other symptoms mentioned, or can give any advice or reassurance, please send an email to

REPLY:

Though I have no suggestion for alternative therapies for the problem, I deal with it by wearing dark glasses when necessary. I have had dimmer switches fitted and have vertical blinds which are closed most of the time to soften the light.

When outside (in my wheelchair) dark glasses are standard.

It may be worthwhile asking for a consultation at an eye clinic/hospital as having recently suffered ulcerated eyes, they gave me drops which did help although they never suggested that they could be permanent?

Hope these suggestions help anyone with a light sensitivity problem.

Regards

Madeline Lear

New Notice 09 / 08 / 03
Does anyone have any experience of the supplement known as Simba, made from the African Potato Tuber? I'm rather reluctant to try it without knowing more about it.

New Notice 10 / 07 / 03
Can anybody help with suggestions of alternative therapies for a severe ME sufferer who is completely bedridden for whom no mainstream medical help is being given. Any ideas would be very much appreciated.

New Notice 12 / 06 / 03
I am interested to hear from anyone who has suffered with, or is suffering from, severe one sided face pain or neck pain. Also was, or is, it more painful after trying to eat or talk or with movement. How did you cope with it? Were you given a diagnosis or any treatment?

New Notice 12 / 06 / 03
"Does anyone have a stairlift? Just wondering because we're planning to get one and are getting conflicting advice from different companies. Do you have mains or battery operated? If there's a powercut on mains are you stuffed or is there a backup? Do the batteries last long and are they expensive to replace? And which company did you buy from? Could really use a bit of feedback if any of you have got a stairlift because we're a little confused at the moment! Please reply directly to liz@thecartwrights.fsnet.co.uk Many thanks!

New Notice 12 / 06 / 03
I have recently established a group for ME people using Social Services/Direct Payments and those interested in the issue: http://groups.msn.com/TheMECFSSocialServicesUsersGroup

New Notice 01 / 06 / 03
Please could anyone with experience of using direct payments let us know anything particularly helpful about the scheme and also any difficulties you have had with it. We are collecting people's experiences of the direct payments scheme so that we can help those who may enquire about it, or who are thinking of using it. We already have had one enquiry - please let us know if you are happy for us to pass your details on to that person. Many thanks.

New Notice 25 / 05 / 03
Has anyone experience of a DLA periodic enquiry, where a (non-medical) person from the DWP visits to check on entitlement to DLA? We are collecting people's tips / experiences on this, should we get future enquiries on this issue.

New Notice 15 / 05 / 03
am currently waiting for a reply to a complaint I have submitted to Oldchurch Hospital concerning my treatment there. They forced me to go from not being able to feed myself to feeding myself everything with no grading whatsoever. If anyone has had similar experiences please can you write to me? I would be especially interested if you are willing for me to refer to your own experience to back up my own case that Professor Findley and the Occupational Therapists can push people to do something that is not good for them and act in opposition to NHS guidelines which say that you are always entitled to refuse a treatment. I understand if you do not feel able to help in this way. Perhaps, if you are receiving significant support as a result of the hospitals help you won't want to do this, and I understand. With this illness, we need all the sources of help we can get. However if you did wish to write to me in confidence, I would be grateful. Wishing you all the best with your health.

New Notice 15 / 05 / 03
I'd be interested to hear from anyone who has ever been an inpatient at The Institute of Neurology (aka The National Hospital for Neurology and Neurosurgery in London.) Was it a positive or negative experience and what sort of things go on there? Therapies, practices etc.

New Notice 15 / 05 / 03
I'm looking for a professionally recorded, spoken relaxation tape/CD without music suitable for someone mostly bedbound. Thank you.

REPLY:

Try the library! I get Talking Books and Music CD's without charge. You can also see a list of what's available and order specific items, again without charge.

Regards

Madeline Lear

New Notice 20 / 04 / 03
Does anyone have experience of seizure like episodes that only occur after developing ME.

REPLY:

My name is Madeline Lear and I am aged 55. I was diagnosed with ME in 1996 and was then diagnosed with "Petit Mal" in 1997. I have blackouts normally lasting a few seconds at a time up to 3 or 4 times a day. Some of them are like a sort of trance like state where I seem to miss a few seconds, others are a total blackout which, unless I am sitting or lying result in a fall. Luckily non of my falls have thus far been too serious.

My GP recently noted that although diagnosed in 97, no medication was given till June 2005. They have started me on "Epanutin" twice a day and thus far it has had no effect at all.

I have an appointment to see a neurologist in the near future and will update you with any results from that.

New Notice 28 / 03 / 03
Does anyone experience very severe pain, which makes it difficult to sleep and/or sit upright? Has anything helped?

REPLY:

I have suffered from severe pain in my back, joints and muscles almost from when I was diagnosed in 1996.

My GP has been very helpful in trying various medications. I currently use "Tylex" which is a prescribable version of Paracetamol 4 times a day which helps a lot. And Gabapentin to help with constant muscle spasms at the base of my spine.

I tried a "Tens" machine which didn't work for me so the pain clinic changed it to a, " ENM Pain Relief Device" by Remedia, which does help to ease muscle spasms in my back. I also use relaxation techniques including "some" Yoga.

Keeping my mind off the pain also helps and for this I get Talking Books from the local library who do not charge disabled people for the service.

Hope this is useful

regards

Madeline & Chris Lear

New Notice 28 / 03 / 03
Has anyone had particular problems with one foot as a neurological/physical symptom and with blood 'pooling' in one foot as opposed to a general circulatory problem to the feet?
Did anyone ride a bicycle a lot pre ME ie daily commuting or racing and see a correlation in their particular physical symptoms in the principal areas once used for cycling?

Notice date 21 / 03 / 03
I am 2/3 bedbound and use an electric wheelchair. I am desperate for some respite care and it has been suggested that Burrswood Healing Centre may be suitable as it has a hospital section for people with high dependency needs. I have visited its website and as a result am a bit apprehensive as they appear to have a 'set' programme aimed at CFS and I don't want any respite care to prove counter-productive. Please, if you have ANY experience of Burrswood I would be VERY grateful to hear from you.

Notice date: 26 / 01 / 03
Does anyone take Gabapentin/Neurontin and what have been the subsequent benefits, or side effects, if any?

REPLY:

I am on Gabapentin twice a day for back pain. It does help though I cannot say for certain whether I have noticed any side effects.

Has anyone else had a problem with it?

Regards

Madeline

Notice date: 26 / 01 / 03
There was a request in the Quarterly about where can you buy foam ear pugs. I have been able to buy them in a motorbike shop and the DIY section of a shop, where they sell the breathing masks and ear-defenders.I was able to buy the wrap-around dark glasses from the local Blind Association. A lot of blind people need to wear them.