A. Some useful information from Dr Ros Vallings about swine flu and Tamiflu.
I do not think there needs to be any special recommendations specific to CFS really. If they want Tamiflu on hand they can get a prescription from the GP and if they do get flu (and I mean proper flu - not just a cold) then Tamiflu is available over the counter ($74 approx) - even on prescription they have to pay for it. It seems a safe med for those with CFS.
Re immunisation, reg flu immunisation does not protect against swine flu, and usually we do not recommend flu injs for those with CFS. I have seen a number of relapses with these injections.
However if it come to immunisation for swine flu, then they need to weigh up pros and cons and discuss with their own GP. For the elderly and those with serious chest conditions it is probably wise to consider it in these circumstances.
B. Some recommendations about avoiding the spread of infection. Some are more obvious, but the last two points especially need to be noted.
1. Wash your hands. By washing your hands with soap under warm running water, you will reduce your chance of getting the flu.
Alcohol-based hand gel can also be used if soap and water are not readily available. It’s a good idea to keep some with you in your pocket or purse when you travel.
2. Practice proper cough and sneeze etiquette. Cover your mouth and/or nose to reduce the spread of germs. Remember to wash your hands afterwards.
3. Try to avoid close contact with sick people.
4. Monitor your health.
5. If you have NOT been travelling overseas and develop flu-like symptoms, stay home and away from other people, keep up your fluids and treat the symptoms with the usual flu and cold medications. If your symptoms worsen and you are worried, phone your GP or Healthline on 0800 611 116 for advice.
6. If you have been in Mexico or North America in the past fortnight and develop flu-like symptoms, phone your GP or Healthline on 0800 611 116 immediately.
(With thanks to ANZMES President Heather Wilson).
James - May 3rd, 2009
At 11:00 AM London time on May 28, 2009, ME/CFS researcher Dr. Kenny De Meirleir, MD, PhD, spoke at a press conference unveiling his team’s groundbreaking findings regarding the illness called Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). The presentation covered the team’s conclusions concerning the complex mechanisms of ME/CFS pathogenesis, a diagnostic test they have developed “for a major cause of ME,” and possible therapeutic strategies.
James - June 11th, 2009
Many of the ‘Bulletin’s’ readers who are CFS patients may have experienced a version of the following scenario told to me by one of my patients: “Since coming down with CFS, food shopping has become an increasingly difficult task for me. I used to be so organized and enjoyed going shopping once a week for all my family’s needs; it made me feel good. I am not able to do this anymore and now go whenever I feel up to it physically and mentally. I generally make a shopping list and try to at least get some of the crucial items, because I never know how long I am able to stay in the store, sometimes I don’t even make it there. I get so confused and exhausted if there is a lot of traffic, I have to stop and then turn around. Once I could not remember where I had to turn and even got briefly lost. I just sat in my car and cried.
More at The Bulletin of the IACFS/ME
James - June 11th, 2009
Almost two years ago to the day, I attended a lecture by a scientist who was able to induce a state of suspended animation in mice using the gas hydrogen sulfide, or H2S. As I listened to him, I was struck by the similarities between what happened to the mice, i.e., a decrease in core body temperature, an apnea-like sleep state, reduced heart and respiration rates, and a severe metabolic drop, and what happens to people with CFS/ME.
Out of that idea grew my hypothesis that CFS/ME is caused by dysregulation of hydrogen sulfide metabolism. Further I postulate that the multi-system disturbances in the homeostasis of endogenous H2S result in mitochondrial dysfunction.
James - June 11th, 2009
Our Wellington ME/CFS Support Group was founded in 1995, to provide an environment where people with ME/CFS can find support and meet with others with the same condition. As the ME/CFS Society of Victoria describe themselves, we’re a group of very ill people who try to support very ill people. We’ve managed to keep going for the years since then and hopefully will keep going for as long as there are people who need us.
For the first ten years the June meeting was always our birthday party and it seems like a good time to revive the custom with a shared lunch on the coming Monday June 8. It will be held at the usual time of 12:30 to 2:30pm, in the usual place, the hall behind St Judes Church, Freyberg Street, Lyall Bay.
We can talk informally around the lunch table about how we’re all doing, raise anything we want to share or discuss and welcome any new members or visitors.
Finger food will be provided, so we will need to ask for a gold coin to cover costs. Alternatively, you’re welcome to bring some food to share.
*** We do need to know how many will be coming, so please reply by email and let us know if you can come and if so whether your contribution will be the money or the bag (or plate).***
If you can’t be there, we’re sorry you can’t be with us. Take good care of yourselves and keep warm.
James - June 1st, 2009
Scientists have developed a £13 home-testing kit which they claim will help identify people suffering from myalgic encephalopathy (ME).
James - June 1st, 2009
Numerous medical professionals and specialists treat Fibromyalgia. One specialty in particular, Physical Medicine and Rehabilitation, is especially skilled at diagnosing and treating this chronic condition.
This article – excerpted from Dr. Pellegrino’s highly praised book, Fibromyalgia: Up Close and Personal* - explains his approach to diagnosis and treatment as a board certified Physiatrist who has seen more than 20,000 FM patients in his practice at the Ohio Rehab Center. Dr. Pellegrino has been a Fibromyalgia patient himself since childhood.
James - May 21st, 2009
I do believe that these symptoms are temporary. That is, they are due to systemic functional changes in the body, rather than permanent organic damage. Stopping the amygdala’s hyper-reactions allows the body to trigger the parasympathetic system, meaning the body’s own healing mechanisms can bring it back to balance and homeostasis. - Medical researcher Ashok Gupta
Medical researcher Ashok Gupta has raised much interest with his ‘Amygdala Hypothesis’ for ME/CFS/FM and associated illnesses, and the Amygdala Retraining™ techniques he believes have helped him and many others to ‘re-set’ a chronic over-stimulation of the brain’s unconscious alarm and protection responses. He says the techniques do offer hope of improvement or recovery now for many with these illnesses, and further medical research is required to develop supporting treatments.
More at ProHealth
And even more at ProHealth
James - May 6th, 2009
A drug which is normally used to treat heroin addiction can deliver “life-changing” results for a range of medical conditions, sparking calls for it to be offered more widely to patients.
Medical experts claim that low-dose naltrexone (LDN) has been used successfully for people with a variety of conditions which affect the immune system, including multiple sclerosis, Crohn’s disease and chronic fatigue syndrome.
Some of the world’s leading medical speakers and practitioners are flying into Glasgow this week as the first European Low Dose Naltrexone (LDN) Conference comes to Scotland. Held on Saturday 25th April at the Western Lecture Theatre at University of Glasgow, the conference will attract leading medical professionals and patients who are interested in the use of the drug LDN in the treatment of many different autoimmune diseases - including multiple sclerosis, Crohn’s disease and chronic fatigue syndrome or ME.
Dr Chris Steele the resident doctor on the This Morning television programme and long time supporter of LDN will also attend the conference.
The conference is being organised by Glasgow nutritional medicine practitioner Dr Tom Gilhooly of Essential Health Clinic in Rutherglen. Having worked with heroin addiction patients and using the drug Naltroxene for over twenty years, Dr Gilhooly found that the lower dose (LDN) could work across a number of conditions and is now a leading specialist in the application of LDN for autoimmune diseases.
James - April 27th, 2009
The mother of a prominent ME sufferer and campaigner has been charged with the attempted murder of her daughter.
Lynn Gilderdale, 31, who had suffered from ME for about 17 years, was found dead at her home in Stonegate, near Heathfield, East Sussex, on 4 December.
Sussex Police said Kathleen Gilderdale, 54, of Stonegate, had been charged with her daughter’s attempted murder between December 2 and 4 December.
She has been bailed to appear at Brighton Magistrates’ Court on Tuesday.
James - April 18th, 2009
Individuals views expressed in Brainstorm (The Web Site) do not necessarily reflect those of the Wellington ME/CFS Support Group.
Any information provided is not intended for use as, or to replace professional medical/diagnostic advice. If you have medical issues you should consult a physician.
Brainstorm (The Web Site) and the Wellington ME/CFS Support Group assumes no responsibility for the choice or outcome of any treatment by its readers.
Everybody is welcome to join Gerda every Friday between 12:30-2:30 at 27 Mexted Terrace, Linden, Tawa (Tawa Art and Craft Society Inc building)
Fine art, painting, poems, craft, scrapbooking, artist trading cards etc. It is about creating something with people to whom you don't have to explain about ME/CFS. Bring your art project or come a long and get some ideas what to do. If you just want to pop in for a coffee you are most welcome to.
For more information email the group, or contact Gerda.
Download the Groups information leaflet.
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