ANNOUNCEMENT: HIGHLIGHTS OF QUEST 85 - FALL 2010
by Lydia Neilson
QUEST
COMMUNICATION NO. 85
FALL 2010
HIGHLIGHTS
1. Understanding XMRV and MLVs
2. President of the IACFS/ME speaks out on CDC XMRV
3. Dr. Lerner – Newest member of Advisory Board
4. New Diagnostic Criteria for Fibromyalgia
5. Resting Brain associated with Spontaneous Fibromyalgia Pain
6. Preparing for 2011 Research & Clinical Conference
7. News Snippets
8. Canadian Blood Services Q & A
9. Submission on the Use of Audiotapes during Independent Examinations – End
10.Principles Governing the Request of Defence Psychiatric Medical Examinations
11.Unheard Voices: My Story Update
12.Resources
PUBLISHED DATE: WEEK OF OCTOBER 18, 2010
QUEST is the quarterly newsletter of the National ME/FM Action Network and is available free of charge with an annual membership fee of $25.00.
See http://www.mefmaction.net for membership application or call 613.829.6667
JOIN THE ACTION AND BECOME A MEMBER
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
13 years, 6 months
ANNOUNCEMENT - FLU VACCINATIONS & ME/CFS
by Lydia Neilson
FLU Vaccination And ME/CFS
by Alison C. Bested MD FRCPC
October 2010 greetings! As we enter the flu season, I am writing to you about the flu vaccine as my patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) often ask me whether or not they should have it.
That depends on a number of factors:
. If you are allergic to eggs, you should not get a flu shot as the vaccine contains egg protein.
. If you had the vaccine in the past and did not have any problems with it, then probably you
would tolerate it this time.
. If you have never had it before, then the first question is whether you need it. If you are totally
isolated in your own home and your caregivers and family are very aware that they should not
come to visit you or care for you if they are ill, then your risk of exposure is minimal.
. If you go outside the home, then you could take the following precautions. Take a disposable
paper mask with you if you have to visit public places e.g. doctors' offices, church, stores. If
anyone is coughing then put your mask on immediately so that you do not breathe in viral
particles. Try to keep your hands off of your face, especially after coming into contact with
another person (e.g. shaking hands) or an object just used by another person (e.g. a pen) so
that you do not transfer viruses from your fingers to your eyes and nose. These are easy entry
routes for viruses into your body.
If you decide you would like to be vaccinated, then I recommend starting with an injection of one third the usual adult dose. If there are no side effects, then the same dose can be repeated in a month's time, and the same again after one further month. The reason for this is that Physicians specializing in ME/CFS, including myself, have reported cases of flu symptoms in some patients with ME/CFS for 4 or more weeks after the full dose of flu vaccine has been given. It is unknown whether patients with Fibromyalgia or Environmental Sensitivities and/or Intolerances are more prone to such a response. However overlap of these conditions with ME/CFS has been repeatedly reported in the medical literature, and so caution is probably wise. Having symptoms for this length of time is not normal after a flu shot. It is called an adverse vaccine event and needs to be reported to the Department of Health. There is an Adverse Vaccine Event Form that must be filled out by the doctor. Each region has its own Department of Public Health.
Last week I returned from a medical conference and one of the doctors reported that after his patients' Vitamin D levels (Vitamin D 25 hydroxy) were monitored and brought up to the mid-normal range that his patients had reduced outbreaks of flu last winter. Most of his patients needed between 3,000 to 6,000 International Units of Vitamin D3 (its active form) daily. I would suggest that patients and families have their Vitamin D25 hydroxy levels checked and take Vitamin D3 to bring it into the mid-range and see if by having a normal Vitamin D3 levels that it also helps them avoid the flu this winter. All of these patients have a higher risk of developing osteoporosis due to decreased mobility from their fatigue, so patients should have their Vitamin D levels checked for this reason alone.
All the best to you and yours,
Alison C. Bested MD FRCPC
Haematological Pathologist Staff Physician and Medical Specialist Liaison Environmental Health Clinic Women's College Hospital Toronto, Ontario
Lydia E. Neilson, M.S.M. , Founder
Chief Executive Officer
NATIONAL ME/FM ACTION NETWORK
512 - 33 Banner Road
Nepean, ON K2H 8V7 Canada
Tel. 613.829.6667
Fax 613.829.8518
Email: mefmaction(a)ncf.ca
www.mefmaction.net
13 years, 6 months