Anyone in South Wales?

[Maddoglady62]

I've been off work since August with what started as a chest infection, but although the infection eventually got better, the virus symptoms didn't go away. I suffer from constant fatigue and muscle aches, intermittent headaches and joint pains. My GP thinks it's ME, and I'm currently going from one consultant to another, only to be told what it isn't. That's useful, but I want to know what it IS. I don't know if I'm well enough to return to work at the end of this month, as when I'm going through a particularly bad phase, all I can basically do is sleep.

I've looked, and can't find any dedicated CFS/ME specialists near where I live in Swansea, nor references to any support or advice groups. Does anyone have any advice as to where I might look for more specialist help?

Thanks.

[ALKT]

i can highly recommend the pheonix rising site for info regarding m.e you should take heed about exercise and me doing to much in the early stages can cause long term harm . i hope you do not have this awful disease because there is very little the medical proffession can do for you.

[myhealthneeds]

Hello! Welcome! Yes I'm in South Wales and we have the group MESiG in Cardiff. We have a website and Facebook and we meet (for those who can) once a month in Llanishen, North Cardiff (just off the M4). We have a joining fee of £10 per year. We do home visits or can keep in touch via email/phone/text, whichever way you find best. We assist you to apply for Benefits and will sit with you through an assessment. There are no Specialists for ME in Wales. There is a rumbling of a Clinic to be set up in Cardiff...we are watching this space... Please do not feel pushed to try to do more. Listen to you body and give it the rest it needs. When you have a little energy do not try to get everything done asap. Just do much less than you might need to do and take rests between each thing you do. I will message you on here with my details but you can look up MESiG, as I said. ME Support in Glamorgan. Look forward to hearing from you. Btw years ago I lived (the Uplands close to Dylan Thomas's house) and worked in Swansea when I left college.

All the best,

Miriam (Political Liaison Officer for MESiG)

[kenniethecampervan]

HI, Sorry to tell you but there is no help for this condition. The experts don't know what it is and most do not belive the condition exists. As for benefits you won't get any help there either. As far as I can tell it is definitely neurological and physical. I think it is something to do with the central nervous system and cells in the body but research is required. Evidence of a certain chemical was found in higher concentrations in cfs suffers so it is definitely something physical in nature going on in the body.

[Cowern]

Hi maddoglady62, I'm in the Rhondda valleys, not much help here either, but as you've probably read, a lot of doctors don't really know how to diagnose this problem. There is no cure, it's very much a case of come to terms with what you can do and work along with it, it does affect different people to varied degrees so best get to know yourself and what you can do! 😃

[myhealthneeds in reply to Cowern]

ME AWARENESS IN WALES: Hi there Cowern. Even though MESiG is based in Cardiff we support people anywhere, especially throughout Wales. We can visit, or support you with Medical appointments. Cardiff at the Health is trying to set up a service for ME in the Pain Clinic and we have some patients going to appointments to see how much they offer. The doctor from this clinic came to our last meeting. She is a lovely person. Also to Neurology at the Heath. One of the doctors will see ME patients and he believes in the condition. We all need to pull together to get make things work for Wales and for ME. You can officially join MESiG for £10 per year or just correspond with us if you're hard up. We help with Benefits claims too, no guarantee, of course, but we do know the best way to state things and will support you during an assessment. Also we have a contact - a man who you can pay to sort out your Benefits claims. He manages to turn them around at Tribunal in around 94% of cases. He works all over the UK even though he is based near Cardiff - South Wales Benefits Service.

Have you tried contacting the ME Lead for your area? Each Health Board in Wales has an ME Lead, except ABHB who cannot find a suitable person who will accept the position. We have not had real reports of what these people will do for the individual ME patient but I guess we ought to be in touch with them. The Lead for C and Vale is the doctor who came to our meeting last month to answer our questions and the other doctor is from Velindre Hospital who is working alongside them, so it's really good that we have these links. I also attend all the meetings that I hear about to do with health in the Cardiff area and talk about ME to whoever will listen.

We have an AM on board: Julie Morgan from North Cardiff - and also Jane Hutt AM from the Barry area. We get good support from both and Julie sponsors us to go to the Assembly and do presentations there, including the Millions Mission last Sept 27th when we took over the STEPS at the Assembly for the day. In May we have a big concert in a hall near Cardiff station with Cardiff Rock Choir, an Indian international soloist singing romantic songs, her daughter and Teen Team doing Bollywood dancing, hopefully a Welsh choir and soloist. We hope the AMs will turn up too and we're inviting Vaughan Gething, the Minister of Health, who I've already met a couple of times. We have several Cardiff Uni students on board who are doing a film and publicity for us for their course and their tutor helped with our Newsletter at the end of last year. So help us to share the awareness, even if it is just by email on on here. You can see the FILM of Millions Missing on our website too. This was filmed by Made in Cardiff by a lovely young woman.

So KEEP IN TOUCH! TELL US ABOUT EVERYONE WITH ME/CFS/FIBROMYALGIA in WALES.

TOGETHER WE ARE STRONGER.