Information
- About.com: Fibromyalgia & CFS - This is a major information portal with much information about ME/CFS and Fibromyalgia, moderated by a Fibromyalgia patient. There is as an active community, in the comment section of articles, and in their forums. The downside is that the sheer amount of information can be quite overwhelming, particularly for a new patient. I find the blog articles written by the site guide to be the most helpful, as it distills a lot of the information into easier to digest portions.
- CFIDS & Fibromyalgia Self-Help - This site offers email based self-help courses quarterly, which includes a book and worksheets and will connect you with a small group of fellow patients. There is a cost for these courses, but much of the information from the course is available free on their website in their extensive library of articles and worksheets. They also have a self-study version of their course, which is free. This has the advantage of letting you go at your own pace, but the disadvantage of not having the group to connect with.
- ME Association - A UK Organization that provides advice for patients, doctors, and families, and also funds research. They sell information leaflets and put out a quarterly magazine. You do not need to become a member to benefit from their services, but their membership fee is quite reasonable and the funds raised by this are being put to good use.
- Patients Like Me - One of the most useful things patients can do for themselves is keep a diary of their symptoms and treatments. It's also one of the most difficult. This site makes it easier by providing forms and buttons to click to record your information, and will prepare a graph to show how you are doing over time. You can print out a Doctor Visit Sheet to take to your appointments, and my GP finds them very useful. It's certainly easier for me than trying to answer 'How have you been doing since our last appointment?' when I can barely remember yesterday.
- The Spoon Theory - What is it like living with a chronic illness? Christine Miserandino, a lupus patient, gives one of the most helpful analogies I've ever seen in her essay "The Spoon Theory". I've given copies to everyone in my family, and the vocabulary 'I have to stop now. I've run out of spoons' has become part of our daily life. The site also has a forum for connecting with other patients, and many useful articles. Because of the founder's illness, it can be a bit more oriented to lupus than to ME/CFS, but the coping strategies are similar.
- About.com Fibromyalgia and CFS
- But You Don't Look Sick
- ME-CFSCommunity.com
- Patients Like Me
- Phoenix Rising
- Severe ME/CFS: A Guide to Living (Facebook Group)
Help with Benefits (UK only)
- Benefits and Work - This site has a yearly membership fee, but I consider it worth every penny. They publish very in depth guides on how to apply for Disability Living Allowance and Employment and Support Allowance, and they have an active members forum where you can ask questions.
- Government Services for the Disabled - This is the government portal for everything regarding benefits, social care, and everything else about being disabled in the UK
- Prepaid Prescription Card - If you don't qualify for free prescriptions, this is the next best thing. For a little over £10/month by direct debit, this card entitles you to receive all of your NHS prescriptions at no additional charge. If you get more than one prescription filled a month, it will pay for itself.
- Motability - If you are receiving the high rate mobility component of DLA (soon to become PIP), then you might be interested in this program for signing your mobility component over to a car dealer in exchange for a car lease. Even if you can't drive yourself, you can name one or more designated drivers.
Shopping (UK Only)
- Milk & More - Milkmen still exist in the UK! Who knew? Very helpful for those who can't get out easily. If you use the code 9LHQKFG4 you will get $10 off your first shop (and I'll get a $5 off voucher.)
- Pharmacy2U - This internet based pharmacy can request repeat prescriptions directly from your GP if your surgery is registered with them and the medication is delivered the next day. You can also mail them your paper prescriptions to have filled.
- Shopmobility - A registered charity that hires out mobility scooters and powered wheelchairs for the day or longer term.
What resources have you found most helpful, and why? Leave your comments below.
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