 |
Email the Society |
 |
Donations |
ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
Mailing address:
GPO Box 383,
Adelaide,
South Australia 5001
Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')
Office Hours:
Wednesdays, 10am-3pm
Support Line:
(Mondays and Thursdays,
10am-3pm)
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
(local call)
FIBROMYALGIA HELP: Contact Fibromyalgia SA at the Arthritis Foundation of SA 118 Richmond Road, Marleston 5033 Ph: (08) 8379 5711 |
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
|
Disclaimer
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
| Become a Member | |||
|
Letter 1 to Dr Cindy Pan in response to Sunday Mail letter
February 27, 2006
Dear Doctor Pan
I was surprised to read in your column today your response to the question “What is the role of exercise in treating chronic fatigue syndrome (CFS)?”
Both of your opening responses are incorrect. Neither CBT nor any graded exercise program have delivered irrefutible evidence of being of great benefit to patients with CFS.
In fact, the graded exercise program seems to be lacking in scientific credibility at all as the results of a so-called trial now appears to have had no more than 6 participants who had CFS. Also further investigations appear to show that people with CFS actually build up an intolerance to exercising within a short space of time. This of course leads to exacerbation of various symptoms.
I also take issue with your comment that the main symptom of people with CFS is “…a lack of energy.” It seems almost impossible that with all the information about CFS today, a medical pracititioner could still be espousing this.
I would like to direct either you or your researcher to a web site: www.meresearch.org.uk/archive/Making%20the%20breakthrough.pdf which will greatly broaden your knowledge of CFS. On page 4 of this information I urge you to take particular note of comments by Garry Scroop, Professor of Exercise Physiology who completely contradicts your comments regarding deconditioning of CFS patients and the so-called benefits of a graded exercise program.
Page 5 of the above also cites a recent paper from Snell et al (2005) [regarding biomedical research and graded exercise therapy] reported, “These results implicate abnormal immune activity in the pathology of exercise intolerance in CFS and are consistent with a channelopathy involving oxidative stress and nitric oxide-related toxicity.”
Managing CFS is difficult enough without having careless and poorly researched comments made by doctors who are considered by the general public, to be the keepers of the knowledge. What you don’t realise is that comments such as those which were printed today and attributed to you, simply serve no purpose but to make our lives more difficult. Many doctors, wanting to help, but not being able to admit they can’t, are now insisting that their patients become involved in a graded exercise program, and if they are unable to manage this, in many cases they are accused of not wanting to get well. The doctors orders are encouraged and reinforced by well-meaning but ignorant family members, and this only serves to put the patient into an even more intolerable situation.
I find it extraordinary, that on such flimsy, one could hardly refer to it as ‘research based evidence’ regarding graded exercise programs, CFS patients are running a serious risk of being made even more ill than they already are. As the American Centre for Disease Control has stated that people with CFS are more debilitated by the illness than those with chronic heart disease, I doubt that patients with the latter, based on a trial which was carried out with 6 patients, would be told to do something which has the likelihood of incapacitating them even more.
I would also like to bring to your attention, or that of your researcher to two more web sites, where you can obtain good and reliable information about CFS. They are: www.sacfs.asn.au, the South Australian CFS society; and www.ahmf.org, which is the Alison Hunter Memorial Foundation set up by Christine Hunter after her daughter Alison died as a direct result of having Chronic Fatigue Syndrome which was not taken seriously enough by various members of your profession.
It is alarming that having had my illness diagnosed initially by Professor John Dwyer who at the time, 1988, was at the Prince of Wales Hospital in Randwick, I am still writing correspondence such as this to members of the medical profession in an effort to educate people as to the severity of CFS.
I also take issue with your use of the term “Studies show…” (final paragraph of today’s article), which to the lay reader gives it a gravitas which indicates that what you have written is true, yet you gave no references for the studies you were quoting. This is quite mischievous and unacceptable when one is dealing with the health and well-being of members of the community. Non citing of references is not tolerated in an undergraduate assignment, and I see no reason why it should be acceptable in an article written by a medically qualified practitioner giving advice in a newspaper.
If it were as simple as involving ourselves with CBH or graded exercise program in order to recover from CFS, none of us would remain ill. Yet, that thought never seems to enter the head of the members of your profession.
Yours sincerely,
Jennifer Tosolini
Previous Page |
