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

Why I turned down an all-expenses-paid trip to the 2011 Sydney Writer’s Festival — Medium

Why I turned down an all-expenses-paid trip to the 2011 Sydney Writer’s Festival — Medium

Hiller nails the symptoms of ME and the impact it has on daily life.

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."

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.”

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.

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 ;)

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.

We Are Death, Warmed Up | Paul Tomkins

We Are Death, Warmed Up | Paul Tomkins

Tomkins nails it!

"It is torture, of a kind. The unrelenting jab of needles into the spine. The vice clamped to the temples and tightened. The syringes slowly draining blood from the thighs, injecting concrete into the calves. Poison swelling in the stomach, pumping to the veins, tying knots in the guts.

You shake, but not in terror. Even the twilight is too bright. Movement sets flotsam and jetsam tumbling about the head; simply sitting up can be a struggle – postural hypertension sending you giddy. Sights and sounds take longer to travel to the brain, the neural pathways fogged and furred with white noise and static. You are death, ever so slightly warmed up.

This is M.E. as I sometimes experience it, and I’m not one of those acutely affected. I only occasionally feel this ill – usually after any kind of socialising or travelling, or perhaps following a sleepless night.."

A Study Gives Mysterious Chronic-Fatigue Syndrome Some Legitimacy - The Atlantic

A Study Gives Mysterious Chronic-Fatigue Syndrome Some Legitimacy - The Atlantic

"The new Stanford discovery provides some verifiable evidence that CFS sufferers can begin to start cashing in on for increased social legitimacy. So while this research gets medicine no closer to relieving sufferers’ physical symptoms, it takes a step toward alleviating the social maladies of people with CFS."

Not so sure about the phrase "cashing in",  to finally be treat by medical professionals without negative preconceptions would be almost a miracle for all of us with M.E.

Has anyone else experienced offhand, discriminatory treatment?

Promising research by the The SolveCFS BioBank™

Promising research? "The SolveCFS BioBank™ was approved by the Genetic Alliance for operation in April 2010, launching with a partnership with GlaxoSmithKline (GSK) and several of the top ME/CFS expert clinicians in the U.S. Current research being conducted on the SolveCFS BioBank™ asks specific questions like,

•Are there autoantibody differences in ME/CFS patients compared to healthy controls?
•Are there immune profile differences in ME/CFS patients compared to healthy controls?
•Are there antibodies to viruses in ME/CFS patients that are different than health controls?
•Are there blood biomarkers that distinguish ME/CFS patients compared to healthy controls?
•Are there epigenetic differences in ME/CFS patients compared to controls?

Between now and the end of 2014, the Solve ME/CFS Initiative will post several blogs that will describe the exciting research coming from the SolveCFS BioBank™." solvecfs-biobank

ITP Support Association

ITP Support Association interesting re bruising and bleeding.

Professor-Surgeon team headed to third phase clinical trials for Fibromyalgia treatment

Hopefully a very promising trial.. Anti viral and anti-immflammatory combination “Not only that, but many of his patients began having symptoms when they were teenagers, and their symptoms would get worse in times of stress, which seems to indicate a virus. He talked to his mom, who was a virologist, and they thought the symptoms might be caused by a herpes virus because once you have that virus, you have it for life.” So Pridgen began asking his patients if they would be interested in taking an antiviral medication, Famvir, which prevents various strains of herpes viruses from replicating. Desperate for a solution and with nothing to lose, many of his patients agreed. Some of these very same patients also had symptoms of arthritis, for which Pridgen would give them samples of the anti-inflammatory drug Celebrex. “Those who took the antiviral came back to his office and admitted they felt better, but not 100 percent better,” Duffy said. “The patients who took both drugs, however, came back and said everything was better. Their fibromyalgia was gone. Their chronic fatigue was gone. Their headaches were gone. All of these things had cleared up. When the first few patients approached him, he thought it was a fluke, but as more and more and more patients said the same thing, he knew it couldn’t be a coincidence.”

Migraines and me

Migraines feel almost constant, diary reveals have them at least 4 days from 7,  pre 2014 used to be intermittent. Cannot have beta blockers as they caused asthma now have for ever, am already on nortryptaline for sleep disorder, this year under GP have been on pizotefen for 3 months then topiramate for months, now off all preventatives awaiting neurologist next February. Have cut painkillers to absolute minimum as they do little for pain really and exacerbate grogginess....nightmare!

Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study - Journal of the Neurological Sciences

Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study - Journal of the Neurological Sciences



"Conclusion: This is one of the largest series of FM patients
demonstrating a significant reduction of IENFD in their skin biopsies.
The findings indicate that in a subset of FM patients, the pain
syndrome is, at least partially, of neuropathic origin. Skin biopsy
may prove a useful tool and a potential biomarker in future studies of
FM patients."

Brain differences linked to chronic fatigue syndrome - Health News - NHS Choices

Brain differences linked to chronic fatigue syndrome - Health News - NHS Choices

They found the volume of white matter (nerve fibres) appeared to be lower, on
average, in the people with CFS. There were also differences in the magnitude of
water diffusion (a measure known as fractional anisotropy) in one particular
white matter tract on the right side of the brain, which connects the temporal
with the frontal brain regions.

Study finds brain abnormalities in chronic fatigue patients | News Center | Stanford Medicine

Study finds brain abnormalities in chronic fatigue patients | News Center | Stanford Medicine



Q for neurologist ...normal white matter volume?

USA social security criteria for people with M.E. and/or fibromyalgia.

Very interesting article by disability lawyers regarding USA social security criteria for people with M.E. and/or fibromyalgia. "I. What is CFS? In determining a case of CFS, the first portions of this section (A. and B1.) largely follow the 1994 CDC definition, the text of which can be found on page 3 of the Ruling. Following the CDC definition, the Ruling makes clear that a “physician should make a diagnosis of CFS ‘only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded.” Also, the Ruling makes an important addition to the CFS Case Definition by noting that post-exertional malaise lasting more than 24 hours “…may be the most common secondary symptom.” So it will be very important for patients and doctors to document this symptom/sign. However, in section B2., “Other Symptoms”, the Ruling expands the list of CFS diagnostic symptoms as more recently outlined in the Canadian Criteria and the International Consensus Criteria:“Other Symptoms. Within these parameters, the CDC case definition, CCC, and ICC describe a wide range of other symptoms a person with CFS may exhibit: •Muscle weakness; •Disturbed sleep patterns (for example, insomnia, prolonged sleeping, frequent awakenings, or vivid dreams or nightmares); •Visual difficulties (for example, trouble focusing, impaired depth perception, severe photosensitivity, or eye pain); •Orthostatic intolerance (for example, lightheadedness, fainting, dizziness, or increased fatigue with prolonged standing); •Respiratory difficulties (for example, labored breathing or sudden breathlessness); •Cardiovascular abnormalities (for example, palpitations with or without cardiac arrhythmias); •Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain); and •Urinary or bladder problems (for example, urinary frequency, nocturia, dysuria, or pain in the bladder region).” As will be seen later, the inclusion of these common elements of CFS allows for an increased ability to provide medical evidence of the illness in terms of the necessary documentation of medical signs and laboratory testing. In the last subsection 3 is the following text: “Co-occurring Conditions. People with CFS may have co-occurring conditions, such as fibromyalgia (FM), myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud's phenomenon, migraines, chronic lymphocytic thyroiditis, or Sjogren's syndrome. Co-occurring conditions may also include new allergies or sensitivities to foods, odors, chemicals, medications, noise, vibrations, or touch, or the loss of thermostatic stability (for example, chills, night sweats, or intolerance of extreme temperatures).” Here, again, the new Ruling (based on the more recent CFS/ME and ME definitions) includes many more of the essential elements of the illness that increase the physician’s ability to provide medical documentation. Many of these “co-occuring conditions” are essential symptoms of CFS and their documentation add to diagnostic clarity. Notably, multiple sensitivities and loss of thermostatic stability have for years been known to patients and educated clinicians, but are now just being fully recognized. Other conditions that may explain symptoms similar to CFS: The Ruling reads: “Additionally, several other disorders (including, but not limited to FM, multiple chemical sensitivity, and Gulf War Syndrome, as well as various forms of depression, and some neurological and psychological disorders) may share characteristics similar to those of CFS. When there is evidence of the potential presence of another disorder that may adequately explain the person's symptoms, it may be necessary to pursue additional medical or other development. As mentioned, if we cannot find that the person has an MDI of CFS but there is evidence of another MDI, we will not evaluate the impairment under this SSR. Instead, we will evaluate it under the rules that apply for that impairment.” Therefore, in documenting a diagnosed case of CFS, the treating physician(s) should not only document any co-occuring conditions, but also should be sure to, if possible, clearly differentiate CFS from other conditions that may share over-lapping symptoms." Link

A wolf in sheep’s clothing: how Monitor is using licensing powers to reduce hospital and community services in England under the guise of continuity | The BMJ

A wolf in sheep’s clothing: how Monitor is using licensing powers to reduce hospital and community services in England under the guise of continuity | The BMJ

How it felt at first with chronic fatigue syndrome

How it started for me too "I had woken up barely able to walk. Fatigue hardly described what I felt. Paralysis was more like it. My legs seemed to have been amputated and replaced with tubes of liquid concrete, and just shifting them on the table made me grunt like an Olympic weightlifter. My bones hurt; my brain felt like a swollen mass. Speaking required tracking down and spearing each word individually as it scampered away from me." What is chronic fatigue

Interesting study

LISTSERV 16.0 - CO-CURE Archiveshow white

Wonder  how my white matter will show on CAT scan?

Migraines and me

Have had migraines for as long as I can remember, they are now the most disabling they have ever been.....too knackered to write any more right now :( http://www.migrainetrust.org/my-migraine-journey