ANNOUNCEMENT: Should I take the Flu Shot if I have ME/CFS?
by Lydia Neilson
Dear Friends:
Our Medical Advisor, Dr. Alison Bested, was one of the panel members for the Canadian ME/CFS Clinical Definition, Diagnostic & Treatment Protocols which resulted in a Consensus Document in 2003 and later published.
Some of you have been requesting information as to whether or not to take the flu shot. Please find below Dr. Bested's reply.
Lydia
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: ag922(a)ncf.ca
www.mefmaction.net
13 years, 6 months
Fwd: DR. SALTON NEEDS YOUR HELP WITH QUESTIONNAIRE
by Lydia Neilson
Hi Jim:
I get a lot of requests from people who are selling something but this one caught my interest as I have never received one like that. Can you see what you can find out about this?
Lydia
Begin forwarded message:
> From: Gita Anenberg <gita.an(a)gmail.com>
> Date: October 24, 2010 10:36:15 AM EDT
> To: Lydia Neilson <ag922(a)ncf.ca>
> Subject: Re: [Nmefman] DR. SALTON NEEDS YOUR HELP WITH QUESTIONNAIRE
>
> Dear Lydia,
>
> I have had CFS for over 10 years now and, as most of us, have encountered so many issues trying to adapt to the new way of living.
> One of the issues for me was hair color. Since I had developed all sorts of sensitivities, I could not use conventional products. And the" environmentally friendly" products were either ineffective or still triggered some kind of a negative response.
>
> I now have a solution that may work for others, and would like to share it with CFS community.
>
> My solution not only provides a safe, inexpensive and effective way to colour hair, but it is also an Ayurvedic treatment.
> The ingredients in my custom-made for individual use formals target the optimum results for the desired hair colour as well as help address some specific CFS symptoms holistically.
> The formulas are all organic/natural.
>
> I would be happy to provide individual treatments and consultations to those who may have experienced a frustration similar to mine.
> My fees start at $50 for a one-time consultation, $50 for a treatment. Products for home use range from $15 to $30.
>
> This is also my attempt to turn my CFS disadvantage into advantage and find new ways of earning my living while contributing to the community.
>
> Please let me know if/how I could make this available to those who would like it
>
> Regards,
> Gita Anenberg
> gita.an(a)gmail.com
> 416-730-9596
>
> On Sun, Oct 24, 2010 at 10:01 AM, Lydia Neilson <ag922(a)ncf.ca> wrote:
> > Dear Friends:
> > Dr. Herman Salton, who is a researcher, residing in England and also has
> > ME/CFS is writing several books and has designed a questionnaire which he
> > asks you would kindly complete and forward to him. He feels it is his
> > obligation to make sure that your voice gets heard.
> > If you would like to participate, please let me know and I will forward the
> > questionnaire to you. In the alternative, if you have questions etc.,
> > please contact Dr. Salton at:
> > Dr. Herman Salton
> > Clarendon House
> > Victoria Terrace
> > Aberystwyth SY23 2DG
> > United Kingdom
> > Email: herman.salton(a)aucklad.ac.nz or
> > herman.salton(a)exeter.oxon.org
> > Lydia
> > 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: ag922(a)ncf.ca
> > www.mefmaction.net
> >
> >
> >
> >
> >
> >
> > _______________________________________________
> > Nmefman-contacts mailing list
> > Nmefman-contacts(a)lists.ncf.ca
> > http://lists.ncf.ca/mailman/listinfo/nmefman-contacts
> >
> >
>
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: ag922(a)ncf.ca
www.mefmaction.net
13 years, 6 months
ANNOUNCEMENT: FOLLOW UP TO DR. SALTON'S REQUEST
by Lydia Neilson
Dear Friends:
I sent the notice below a few days ago:
Dr. Herman Salton, who is a researcher, residing in England and also has ME/CFS is writing several books and has designed a questionnaire which he asks you would kindly complete and forward to him. He feels it is his obligation to make sure that your voice gets heard.
I have been in contact with Dr. Herman as some of you wrote stating they wanted to participate, but they had Fibromyalgia. I asked him to consider Fibromyalgia and he has just replied that he welcomes the input from those with Fibromyalgia. Therefore, if you would like to participate, please let me know if you would like me to forward the questionnaire to you.
Take care.
Lydia
If you would like to participate, please let me know and I will forward the questionnaire to you. In the alternative, if you have questions etc., please contact Dr. Salton at:
Dr. Herman Salton
Clarendon House
Victoria Terrace
Aberystwyth SY23 2DG
United Kingdom
Email: herman.salton(a)aucklad.ac.nz or
herman.salton(a)exeter.oxon.org
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: ag922(a)ncf.ca
www.mefmaction.net
13 years, 6 months
DR. SALTON NEEDS YOUR HELP WITH QUESTIONNAIRE
by Lydia Neilson
Dear Friends:
Dr. Herman Salton, who is a researcher, residing in England and also has ME/CFS is writing several books and has designed a questionnaire which he asks you would kindly complete and forward to him. He feels it is his obligation to make sure that your voice gets heard.
If you would like to participate, please let me know and I will forward the questionnaire to you. In the alternative, if you have questions etc., please contact Dr. Salton at:
Dr. Herman Salton
Clarendon House
Victoria Terrace
Aberystwyth SY23 2DG
United Kingdom
Email: herman.salton(a)aucklad.ac.nz or
herman.salton(a)exeter.oxon.org
Lydia
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: ag922(a)ncf.ca
www.mefmaction.net
13 years, 6 months
CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE (CFSAC)
by Lydia Neilson
Dear Friends:
A videocast of the CFSAC meeting held in Washington, DC. at Department of Health and Human Services October 12-14th, 2010 is available at http://www.hhs.gov/advcomcfs/
Go to right-hand bar that says CFSAC Meeting and choose what you want to see. There are agendas, videos of each day, and under Meetings are the testimonies.
It is the interaction and collaboration of politics, research, clinicians, and patients
Lydia
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: ag922(a)ncf.ca
www.mefmaction.net
13 years, 6 months
ANNOUNCEMENT: HIGHLIGHTS OF UPCOMING NEWSLETTER
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
>
>
>
>
>
> PUBLISHING 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.
>
> Application form at www.mefmaction.net
>
>
>
>
>
>
>
>
>
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: ag922(a)ncf.ca
www.mefmaction.net
13 years, 7 months