aimossy
Senior Member
- Messages
- 1,106
I keep wondering if there are any of our members who live near you.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I keep wondering if there are any of our members who live near you.
I agree re the MP. I worked for one some years ago for a short time, and he said he had no real power but saw himself as a conduit for his constituents to get to who they needed/wanted to, as 'the powers that be' DO take note of the MP's letter and it gets dealt with on top of the pile normally.
Just to let you all know that PD is really too ill himself to deal with any of the fantastic suggestions - especially thank you to the member (sorry, cant remember name - brain!) who compiled the list.
I am trying to get an advocacy organisation involved in PD's case as even typing is too difficult for him. And I will try and follow up some of your suggestions for him.
At the moment my braodband is broken and am typing this in my friends very freezing house!
I'm sure messages of support are appreciated.
Thank you so much, Justy, for letting us know, and for your deep caring.
Wishing you broadband, warmth, the perfect solution, and love.
Such love to PD as well.
Also when medics go their own sweet merry way on medical notes there can be many errors and omissions , It would be important to address any errors in writing too I suspect and have an accurate record of physical symptoms down.
Boy you nailed that issue! Amazing how much incorrect info gets into ones chart/records.
Just some thoughts -
I am frozen to the bone too - have a handful of coal left and no other heating. Turning into tortoise mode .
I am sorry to hear this. Is there heating assistance available where you live?
All The Best
Golden
I would like to see all of us move from surviving to thriving!
IttIn 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.