CFS and Related Associations and Support Groups



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Global:

Immune Support (now known as ProHealth.com) has some high level summaries of CFS and FMS, and also includes news articles relating to these areas and also CFS and FMS forums, bulletin boards and communities.
http://www.immunesupport.com/library

CFS Knowledge Center on Ning is a networking site for CFS sufferers.
http://cfsknowledgecenter.ning.com/

The Patient's Voice (TPV) features a CFS and ME blog, which guests or members can leave testimonials on.
http://www.thepatientsvoice.org/Chronic_Fatigue_Syndrome

The Patient Experience (TPE) is a sister site to TPV above, and features articles on health issues and news as well as patient web sites etc.
http://www.patient-experience.com

ICareCafe is a networking site run for sufferers and carers of a variety of medical conditions by the owners of TPV and TPE. I helped to moderate the 'Chronic Fatigue Syndrome & M.E.' forum there.
http://www.icarecafe.com
http://www.icarecafe.com/?page_id=1107&group_id=44

Immune Web has a forum/mailing list for conditions and issues related to the immune system, for example, CFS, FMS, MS etc.
http://www.immuneweb.org/lists/immune.html

WeAreFibro.Org is a global community, perhaps similar to 'myspace', but for the Fibromyalgia community. One can register a profile and discuss issues with other users, and visit profiles etc.
http://www.wearefibro.org

UK:

Yahoo discussion group for National Candida Society members.
http://health.groups.yahoo.com/group/candidasociety

The M.E. Association's web site is listed below. It offers some useful information and suggested tests.
http://www.meassociation.org.uk

Dr Charles Shepherd is the Medical Advisor for the M.E. Association, whilst making many correct statements, believes that 'despite the enthusiasm of many alternative practitioenrs (and self help books on the illness) there is still no proven link between ME and Vitamin deficiencies; Mineral and trace element deficiencies, but publication of the magnesium study quoted by Martin Lev is awaited with interest; Candidiasis, intestinal or systemic; Clinical immunodeficiency, although various changes in components of the immune response (e.g. natural killer cells) are being reported; Toxic colon; Measurable hypoglycaemia. The link with multiple food allergies and environmental sensitivities is very debatable...'

Dr Charles Shepherd believes that the main three groups of medically qualified practitioners who are 'treating' 'M.E.' patients are 'psychiatrists, using anti-depressants and behaviour modification therapy; Dr Peter Nixon, from Charing Cross Hospital, who believes that almost all these patients are hyperventilating/overbreathing; and a small group of private doctors, some of whom are charging desperate patients large sums of money for the very speculative approaches to management...' Dr Shepherd does not believe that all three groups are necessarily treating the same condition. In my view, it is much more than this, that each case of 'CFS' or 'ME' is completely different and unique to that individual, and that methods used by various practitioners of measuring progress is often very crude. Whilst there are indeed many doctors charging large sums for somewhat speculative treatments or partially effective treatments, there are indeed some who are providing effective treatment. Dr Shepherd seems to rule out a number of factors contributing to many cases of CFS and ME, on a somewhat arbitrary basis, despite a great deal of empirical evidence to suggest that they do play a factor in the majority of 'M.E.' cases in some capacity; which leads me to believe that he does not really understand what is going on in the body in each case. Whilst dismissing toxicity and nutritional factors, Dr Shepherd does not promote research to actually disprove these factors and to understand the effect they actually do have. He appears to have a binary approach to 'M.E.' People often assume that because of the name, the M.E. Association is at the cutting edge of 'M.E.' research and is representative of the community of M.E. specialists and sufferers, but this is not really the case at all. Action for M.E. broke away from the M.E. Association in the mid 1980s for this reason. Not that Action for M.E. is perfect either, but it reflects the division in opinion, understanding and approach to CFS and ME.

Action for M.E.'s web site is listed below. Conclusions and recommendations seem to vary in quality.
http://www.afme.org.uk

M.E. Research UK's web site is listed below.
http://www.meresearch.org.uk/research/index.html

The Multiple Sclerosis Resource Centre's web site is shown below.
http://www.msrc.co.uk

The NHS Direct web site provides the following information about CFS. This has been included for comparison purposes, and highlights a lack of understanding of the nature of CFS within the health service.
http://www.nhsdirect.nhs.uk/en.aspx?articleID=102

Invest in ME's web site is shown below. It contains some research papers and links to support organisations.
http://www.investinme.org

Europe:

M.E. Web is a directory of European support organisations for CFS. Treatment recommendations may vary in quality.
http://www.me-net.dds.nl/meweb/europe.html

Foggy Friends is an internet forum for CFS and FMS sufferers.
http://www.foggyfriends.org

USA:

The National CFIDS Foundation web site is listed below. It funds research and publishes research data on its web site.
http://www.ncf-net.org

The CFIDS Association of America's web site is listed below. It provides some useful information about the condition, but treatment information appears to vary in quality.
http://www.cfids.org/about-cfids/medical.asp

American Holistic Health Association's web site is shown below. The web site offers a search on member practitioners.
http://www.ahha.org

Australia:

ME/CFS Society of Western Australia.
http://www.mecfswa.org.au


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