Web sites of interest to people with ME, CFS or Fibromyalgia
Please let us know if you think we should add other sites or sections to this list. This is not a definitive list, but covers some of the sites we have found helpful in 2006.
Note that the monthly newsletters also contain numerous links and interesting articles.
- UK Government Policy, etc
- Introduction, Help, Awareness Raising, Treatments, News and Resources
- Benefits
- Science and Medical Research
UK Policy
http://petitions.pm.gov.uk/ME-is-real/
Sign a Petition to the PM on the Government’s recently introduced Online Petition Service http://petitions.pm.gov.uk/. The petition reads as follows: “We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome. Submitted by Konstanze Allsopp – Deadline to sign up by: 22 January 2008”
The online government petition “ME is real” has now reached 6450 signatures and is in 29th place overall. If you, or any friends or family have yet to sign the petition, please do so. The government’s psychiatric based approach to ME, which means only CBT and GET are pushed and biomedical research doesn’t get government funding, affects FM sufferers as well as ME sufferers as the two conditions are so closely related. If you would like to add your name to this petition, please use the following link http://petitions.pm.gov.uk/ME-is-real/
http://www.erythos.com/gibsonenquiry/index.html
Site for The Gibson Inquiry. The Group on Scientific Research into ME (Chaired by Dr Ian Gibson MP) has been established to assess the progress of scientific research on ME since the publication of the Chief Medical Officer's Working Group Report into CFS/ME in 2002. In particular the Group has been established to: 1) increase public understanding of scientific research into ME/CFS; 2) evaluate progress in the development of a full program of research into ME/CFS; 3) identify research and funding requirements in establishing the cause of ME/CFS. The Gibson Report and the CMO's 2002 Working Group Report on CFS/ME are both available on this site.
Gibson Report Press Release - 26 November 2006 (27 Kb PDF)
Introduction, Help, Treatments, News and Resources
http://fibroaction.org
FibroAction is a dynamic new (2008) association dedicated to educating people about Fibro, especially in the UK. FibroAction was created because a group of people felt that raising awareness of Fibro in the UK was essential to the future wellbeing of everyone with the condition.
Also see: PolkaDotGals Charity Calendar For Fibromyalgia Awareness - http://www.polkadotgals.co.uk
http://www.meassociation.org.uk
The ME Association: One of the larger UK charities - provides good balanced views, helpful background information and information on managing and coping with ME/CFS and obtaining disability benefits.
http://www.ayme.org.uk/
Association of Young People with ME (AYME): Free information, advice and support to people with ME, aged 25 or under, their families and friends.
http://www.25megroup.org/
The 25% Group deals specifically with people severely affected by ME
http://www.meactionuk.org.uk/index.html
ME Action: One of the more active UK charities - tends to cover ME/CFS from a bit more of an activist's position, but provides good information
http://www.afme.org.uk/
Action for ME: National ME/CFS patient support organisation that works jointly with The ME Association on various issues. Pacing is perhaps the most important part of the self help treatments for those with ME/CFS. There is a very good booklet on this produced by the charity "Action for ME" and it’s written with the help of professionals and the experiences of people with ME. It is available for free to download online:
http://www.afme.org.uk/res/img/resources/Pacing%20booklet.pdf
or by post for £3 from Action for ME, Third Floor, Canningford House, 38 Victoria St, Bristol BS1 6BY.
http://www.mesupport.co.uk
This site was created in 2001 by a ME sufferer, Louise Sargent, and is regularly updated. It contains a lot of information on many different subjects surrounding ME including lists of other ME support groups
http://www.butyoudontlooksick.com/
This site is not specifically about ME, but is about living life to the fullest with any disability, invisible disease or chronic pain and hopes to provide answers to the endless questions of: But you don't look sick? It includes the an article entitled "the Spoon Theory" which gives an ingenious method (using spoons!!) of explaining the experience of living with a chronic illness to your friends, colleagues and family.
http://www.fibromyalgia-associationuk.org
As well as offering advice and support to sufferers of fibromyalgia (many of whom also suffer from ME), this site has a very good discussion forum that is easy to use and receives regular postings. Invaluable for letting off steam or finding advice from fellow sufferers and carers.
http://www.doctormyhill.co.uk
There’s a lot of useful information on Dr Myhill's website especially the fatigue link and advice and help on sleep. Dr Myhill has also published a book based on her 20 years of experience of treating CFS which is available free to download (http://drmyhill.co.uk/cfs_book.pdf) or as a printed copy for £15 (incl. p+p) cheque made payable to ‘Sarah Myhill Limited’ with your own postal address to: Dr Sarah Myhill, Upper Weston, Llangunllo, Knighton, Powys LD7 1SL.
http://www.wbna.org.uk/
West Berkshire FM and ME Group is an Honorary Member of the West Berkshire Neurological Alliance
http://www.fmsclinic.co.uk
The private clinics of Professor John E Davies, the FM and ME specialist from Guys Hospital in London. He is one of the few doctors that treats the conditions as the physical and neurological conditions they are.
Benefits
http://www.benefitsandwork.co.uk
Benefits and Work: Guides to disability living allowance (DLA), attendance allowance (AA) and incapacity benefit(IB) for physical or mental health conditions.
Science/Medical Sites
http://www.investinme.org/index.html
Small but very active ME charity focused on generating funds for Biomedical research
http://www.meresearch.org.uk/ (formerly MERGE)
Major ME/CFS national charity focussed on biomedical research
http://www.drmyhill.co.uk/articles.cfm?subject=Fatigue
One doctors view - but logical and sensible scientific approach to treatment/management
http://www.co-cure.org/
Co-Cure - Excellent in depth articles and comments on current Biomedical Research
http://www.everyclick.com/uk/meresearchuk
ME Biomedical Research Fund Raising – So far £2146.84 has been raised for ME Research UK (funding biomedical research into ME) just from clicking! Everyclick is a search engine (like google) that gives 50% of its profits to charities according to the number of clicks the charity supporters make. As everyclick becomes more well known, MERUK is competing with more charities for the available funds and needs as many supporters as possible. So, if you haven't joined already, please go to the site and click on the icon to become a supporter, It will say at the top 'your selected charity is ME Research UK ' and if you click on the charity name it will show you the total number of clicks, number of supporters and the amount raised so far. You can raise money just by clicking on news headlines or using it as your search engine. Please spread the word among all your friends and relations! Why not put the link in your email signature so friends and family get reminded of it. If you set it to be your default search engine or home page then you will use it more often.
http://fibroresearch.blogspot.com
The Fibromyalgia Research Blog, a good source of research into Fibromyalgia.
http://www.medicinenet.com/polymyalgia_rheumatica/article.htm
Some sufferers with fibromyalgia have also been diagnosed with polymyalgia. Further information about polymyalgia can be found on this website.