In case it helps I have Googled to compile the info for the groups recommended:
1. The 25% M.E. Group
Main Office: 01292 318611 - Office Hours 9.30 to 5pm - Monday to Friday
Advocacy Worker: 0141 570 2938 - Office Hours: Wednesday and Thursday 11am - 3pm
You can also email the advocacy worker by clicking a link on this page:
http://www.25megroup.org/contactDetails.html
They have lots of guiding information here on how to get help or fight:
http://www.25megroup.org/info_advocacy.html
2. ME Association -
http://www.meassociation.org.uk/
Quote from their site: "Do you need help? ME Connect – our telephone helpline on 0844 576 5326 – is open every day 10am-12noon, 2-4pm and 7-9pm. You can also email
meconnect@meassociation.org.uk"
More about what their helpline does:
http://www.meassociation.org.uk/information-and-support-line/meconnect/
3. Invest in ME
http://www.investinme.org
I did not find that they offer help for individuals, but you can ask.
No phone number.
Email: info@investinme.org
4. ME Research UK
Telephone: 01738 451234
E-mail:meruk@pkavs.org.uk
Also they are a research organization but maybe worth asking.
http://www.meresearch.org.uk/
5. The Grace Charity for M.E.
http://www.gracecharityforme.org/
No phone number.
Email: info@thegracecharityforme.org
6. Also maybe support group owners or members near you will know more. Big list of groups:
http://www.mesupport.co.uk/index.php?page=uk-republic-of-ireland
7. Action for M.E.
http://www.actionforme.org.uk/
Services Directory: "We have developed a database of 1300 services including UK support groups, advice agencies, NHS clinics and private practitioners, to help you find support in your area and nationally."
http://www.actionforme.org.uk/get-help/services-directory
"Our
Welfare Rights Line offers information and advice on welfare benefits, disability discrimination, employment and insurance issues. Tel: 0845 122 8648
Mon 1 to 4pm
Tue 9.30am to noon, 3.30 to 6pm
Wed 10am to 12.30pm, 2 to 4pm
Thu 9.30am to 12.30pm
Closed on Fridays and bank holidays.
For general telephone enquiries on M.E.-related issues you can call our office on 0117 927 9551 or 0845 123 2380 (lo-call)."
They can help connect a patient with media (newspaper, television). You sound too severe to give an interview but if you are not getting help, it may be worth trying to get media involved.