# Results of a survey of those most severely affected by ME/CFS (by the 25% ME Group)



## tk (Apr 4, 2005)

(May be reposted)[The 25% ME Group is probably the largest group specifically for people severely affected by ME/CFS in the world. Some of their work would be especially applicable to the UK but much would or could be of use to people around the world. Tom]The 25% M.E. Group sent out a questionnaire to its members to help it prepare a submission for an inquiry into M.E.The whole submission is over 50 pages long (it also includes information from previous surveys they have done). It can be found at:http://tinyurl.com/72wrp i.e. http://www.25megroup.org/Campaigning/Gibso...n%20Inquiry.htmHere is its list of Contents1.	Overview and Comments from some 25% ME Group Members (pgs 1-3)2.	Impact of the Chief Medical Officerâ€™s Report (pgs 3-4)3.	Dangerous Strategies (pgs 5-6)4.	Clinical Research (pgs 6-14)5.	Survey Results and Analysis (pgs 14-29)6.	Conclusion (pgs 29-39)(incl. "Finally we invited each respondent to say one thing to the Parliamentary Inquiry - Here is what sixty four severely affected ME/CFS sufferers have to say")7.	References (pgs 39-42)8.	Appendix 1 (pgs 42-53)Appendix 1:"We asked the following question in a rapid response survey to our members: 'What impact if any does the prevailing bias towards psychiatric treatment of ME have upon your life as a sufferer?' These are the responses of 59 severely affected ME sufferers."------------------------------------------------------This is the concluding comment of Simon Lawrence, Chairman of the 25% ME Group:â€œIt is very clear from the above submission that ME sufferers are calling for biomedical research to be undertaken: also to redirect resources into this field (that are presently being wasted on psychological research programmes) in order to make a real difference to the lives of sufferers. The present models of management and treatment within the UK for ME sufferers are flawed as they do not seek to truly answer the question WHY these people are so sick and HOW they are going to be made better?Urgent research funds should be made available from central government in order to implement biomedical research but also to support research organizations like MERGE (in Dundee) and the CFS Research Foundation (in Berkshire). The level of suffering cannot be allowed to continue and this â€˜sticking plasterâ€™ of present approaches to treatment of ME sufferers should be stopped because of the harm being caused.We hope and pray that the Parliamentary Inquiry will seriously consider, not only the technical submissions made, but also the very real human element and suffering caused by this disease.â€ The 25% ME Group website is at:http://www.25megroup.org/It contains a lot of interesting information.Details of how to join can be found at: http://www.25megroup.org/Information/how%20to%20join.htmThey have two types of membershipi) Ordinary membership: This is intended only for severe ME sufferers and their carers.(ii) Associate membership: "This type of membership is open to supporters of the group, including other ME organisations, voluntary and statutory bodies, who support the aims and objectives of the Group, friends and family of members, or individuals who are mildly to moderately affected by ME and those who have recovered from severe ME but may still be interested in the work and services that the Group offers. Associate Membership offers access to all group services with the exception of participation in the membersâ€™ â€œContact Listâ€ for severe ME sufferers."Although most of their members are from the UK, they do also have members from other countries.Tom--------------------------------------------Tom: Two research charities are mentioned above, MERGE and the CFS Research Foundation. Their websites are:MERGE: http://www.meresearch.org.uk [AOL: Here]CFS Research Foundation (CFSRF): http://www.cfsrf.com[AOL: Here]


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## overitnow (Nov 25, 2001)

Following is a report from 2002 re a study in Adelaide which found a 100% correspondance between lowered brain circulation and CFS/IBS cosufferers. This was of interest to me in that I have reversed my digestive and bowel problems with a supplement that increases circulation and is able to cross the blood brain barrier. Some time after reading this I contacted the ME Society in the UK. They e-mailed back that a similar lowered perfusion was found in the brain stem of ME/CFS cases.To me, this suggests that a primary cause may be of a cardiovcascular nature; eg, plaque deposits in various parts of the brain effecting various operations governed by those areas.Mark------------Source: Sydney Morning HeraldDate: May 4, 2002Author: Julie Robotham, Medical WriterURL: http://www.smh.com.au/articles/2002/05/03/1019441434909.html Brain link to fatigue syndrome------------------------------An area of the brain that controls the stomach receives substantially less blood in some people with chronic fatigue syndrome, a study shows. The finding adds more weight to the argument that the controversial illness is biological, not psychological.Brain scans of 40 chronic fatigue patients were carried out by Adelaide scientists and compared against the scans of healthy people. The director of nuclear medicine at Queen Elizabeth Hospital, Dr Steven Unger, who headed the study along with neurologist Dr Rey Casse, said: "There was a very strong change in cerebral blood flow in patients."The study showed a reduction in blood flow to the brain's insula cortex, which governs the smooth muscle in the gut. Unexplained stomach and bowel symptoms are common complaints for chronic fatigue patients.The findings also showed a 20 per cent reduction in blood flow to the left lateral temporal lobe, which controls access to words, in younger chronic fatigue patients. Severe sufferers often experience difficulty expressing themselves.In separate research, endocrinologist Dr Richard Burnett, of the Royal Adelaide Hospital, has shown that chronic fatigue patients who report gastric symptoms empty fluid from their guts at less than half the speed of people who are well."Talking to patients, about half of them have some kind of [gut symptoms], such as abdominal bloating after eating a small meal," he said. "A delay in liquids means a central problem. It comes from the brain."--------© 2002 The Sydney Morning Herald


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