Saturday, December 13, 2014

Research Digest – December 2014: 10 Important Advances in ME/CFS | Solve ME/CFS Initiative

Research Digest – December 2014: 10 Important Advances in ME/CFS | Solve ME/CFS Initiative
While progress is still far too slow, there have been many recent interesting and important discoveries in ME/CFS. In this year-end blog post, Dr. Vernon and Dr. Komaroff summarize what they regard as the most important recent advances in our field

Thursday, December 04, 2014

Sleep and daytime functioning in patients with chronic fatigue syndrome.

The SAFFE Study

"About the study
We are looking at the link between sleep and daytime functioning in patients with chronic fatigue syndrome.
People with chronic fatigue syndrome (CFS) commonly describe problems with their sleep, often reporting both daytime sleepiness and unrefreshing sleep during the night, which may impact on daytime functioning. Research suggests that deep slow wave sleep may be altered in CFS.
In the SAFFE study we will investigate if enhancing slow wave sleep during the night can affect day time functioning.
The SAFFE study is being undertaken by the Centre for Neuropsychopharmacology at Imperial College London, and is funded by the Medical Research Council (MRC) of the United Kingdom. It has been approved by London Brent Research Ethics Committee: 13/LO/0882.

Who can take part?

We are currently looking for people who:
  • Have a current diagnosis of chronic fatigue syndrome
  • Are aged between the ages of 25 and 65
  • Have a good grasp of the English language
  • Can take part in a research study at Imperial College London."

Tuesday, November 25, 2014

Brains of People with Chronic Fatigue Syndrome Offer Clues About Disorder - NYTimes.com

Brains of People with Chronic Fatigue Syndrome Offer Clues About Disorder - NYTimes.com

It affects us seriously so too dam right it should be taken seriously!

" two recent studies — one from investigators at Stanford a few weeks ago and another from a Japanese research team published earlier this year — have found that the brains of people with chronic fatigue syndrome differ from those of healthy people, strengthening the argument that serious physiological dysfunctions are at the root of the condition.

“You’ve got two different groups that have independently said, ‘There’s something going on in the brain that is aberrant,’ ” said Leonard Jason, a psychologist at DePaul University in Chicago who studies the condition, also called myalgic encephalomyelitis and widely known as M.E./C.F.S. “I think you have a growing sense that this illness should be taken seriously.”

Wednesday, November 19, 2014

Novel Fibromyalgia Treatment Shows Promise in Study -- TUSCALOOSA, Ala. and BOSTON, Nov. 18, 2014 /PRNewswire/ --

Novel Fibromyalgia Treatment Shows Promise in Study -- TUSCALOOSA, Ala. and BOSTON, Nov. 18, 2014 /PRNewswire/ --

So often feel as if brewing 20 plus viruses ata atime ...
"
According to Daniel J. Clauw, M.D., director of the Chronic Pain & Fatigue Research Center at the University of Michigan (Ann Arbor), commenting on the PRID-201 results, "IMC-1 shows promise as a potentially new treatment for the millions of people who suffer from this debilitating condition."
 
Fibromyalgia is a multi-symptom disorder involving widespread pain, fatigue, headaches, sleep problems, mood changes and inability to concentrate. Its causes are unknown. According to the National Fibromyalgia Association, an estimated 3-6 percent of people worldwide suffer from the condition—10 million people in the United States alone.
 
The 16-week study evaluated the efficacy and safety of IMC-1, a fixed-dose-combination of famciclovir and celecoxib. 143 FM patients were recruited at 12 U.S. clinics. Patients received either a combination treatment of IMC-1 or a matching placebo.
 
According to Dr. Pridgen, chronic tissue-resident herpes virus may be an underlying cause of fibromyalgia. IMC-1 represents a novel treatment by combining an anti-herpes virus nucleoside analog with the anti-herpes virus activity exhibited by a COX-2 inhibitor.
 
"Many herpes viruses are known to significantly upregulate COX enzymes in the body, which in turn are important for efficient viral replication," Pridgen said. "In theory, physical or emotional stress in patients can reactivate the virus and result in perpetuation of the symptoms of fibromyalgia. Effectively suppressing latent viruses may significantly improve the pain and related symptoms of FM."

What's for tea?

I do not have a clue right now as a migraine is still banging away (with face tingling and steak and kidney smell) for the third day on the rum Migraleve has relieved the nausea but am too pooped to manage anything more than a decaf tea and a banana so far,update to follow hopefully with some improvement.

Tuesday, November 18, 2014

Migraine, keep it down day Monday

Migraines and cooking do not really go well together managed a little marmite on toast (B vitamins) with olive spread for brunch and a plain jacket potato for tea, Pete washed them then in microwave for 10 minutes then into oven for 30 mins or so to make the skin crispy and tasty.

Migraine has had me awake from 4am so time for nap after yet more marmite and toast. Exciting, huh? As long as it stays down it counts as eating well ;)

Monday, November 17, 2014

Cooking with and for fibromyalgia and M.E. - mushroomy mushrooms

Cooking and eating can be a huge challenge for us fibromites, the crushing fatigue for those of us who have that symptom can make even thinking about what to eat a debilitating activity however I believe eating well is crucial for us to be the best we can.

Migraine and irritable bowel syndrome both mean I have to be ultra careful with my diet which is above all else dairy free, closely followed by additive free which goes hand in hand with no processed foods or ready meals.

We fibromites all have many different flare triggers by eliminating dietary triggers we can maybe see more clearly the other triggers.

The list of dietary exclusions may make you think, what the heck does she eat? However, I and my partner enjoy my cooking as does my daughter and her family. We do eat lots of fruit and vegetables, meat, fish and use mostly olive oil for cooking although that depends on the origins of the dish.

Yesterday I made Mary's Mushrooms, based on a Polish recipe from a childhood neighbour whose husband was Polish. I swear you will never taste more mushroomy mushrooms!


400g mushrooms, wiped and cubed
2 medium onions, peeled and chopped small
2oz margarine
2 tablespoons flour
Soy milk
Salt and pepper

Sweat the onions in the marg until soft then add the chopped mushrooms, cook over low to medium heat until all the moisture has come out and cooked off.

Stir in the flour and cook out for a couple of minutes, add soy milk to give a rich creamy texture, season to taste.

This freezes well and we love it just with toast (crostini or whatever posh version of toast you prefer) or pasta...if you do eat dairy use butter and cream although it tastes just wonderful as above.