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I have lived with the illness myalgic encephalomyelitis (ME) for nearly 35 years. The condition is also (misleadingly) known as “Chronic Fatigue Syndrome” and is therefore often referred to as “ME/CFS” or “CFS/ME”. For more information see “About”.
Ever since the results of this £5 million (US$8m) publicly-funded trial were published by The Lancet in 2011, patients have been attempting to gain access to the trial data as the results were spun in a surprisingly positive light. In 2014, I made a request under the Freedom of Information Act (FOIA) to ascertain the number of requests which had been made in total. The answer wasn’t clear but the figure seemed to be well in excess of 150. However, very little data has been released so far and patient groups are still puzzled by how the results have continued to be framed in such positive terms.
Professor White has also used patients’ efforts to access trial information as a vehicle to make spurious claims of harassment against members of the PACE team and a “campaign to discredit the trial”.
“These are really…immunological disorders” Dr. Carl-Gerhard Gottfries (psychiatrist)
It’s a fascinating story. It involves a psychiatrist who over fifty years ago cured his chronic fatigue syndrome using an immune booster. When he was barred from treating others in the clinic with it he resumed his psychiatric work but never stopped thinking about it. Thirty years later he used the same agent to successfully help many people with ME/CFS in an ME/CFS clinic in small town on the west coast of Sweden.
His names is Dr. Carl-Gerhard Gottfries. He’s the founder of the Gottfries Clinic in Sweden. He became interested in ME/CFS and FM almost fifty years ago after the Asian Flu epidemic of 1957/8 ravaged Sweden leaving some with severe and long lasting post-infectious fatigue. When doctors couldn’t explain what was going on with these patients, they were sent, of course, to his psychiatric clinic.
Gottfrie’s detailed examinations of over a hundred patients, however, uncovered no signs of a psychiatric disorder. He might have left it at that – another medical mystery – but then he caught the flu.
Gottfries was in bed for a week – that was normal – but then like his patients he had trouble recovering. Convinced that some of the infection must remain Gottfries began attempting to boost his immune system. In the late 1950’s he didn’t have many options and so he began a course that many today would find frightening – he began poking himself with vaccines.
It took him three years but eventually Gottfries found that a staphylococcus aureus vaccine (Staphypan Berna (Berna Biotech, Switzerland) containing a mixture of staphylococcus strains and a toxoid worked, and his fatigue went away. When his superiors balked treating patients at their psychiatric clinic with vaccines Gottfries returned to his focus on dementia and other diseases.
Visual stress could be a symptom of chronic fatigue syndrome, research suggests
November 24, 2015
People suffering from chronic fatigue syndrome (CFS) could experience higher levels of visual stress than those without the condition, according to new research from the University of Leicester.
CFS, also known as myalgic encephalomyelitis (ME), is a condition that causes persistent exhaustion that affects everyday life and doesn't go away with sleep or rest. Diagnosis of the condition is difficult as its symptoms are similar to other illnesses.
The results of the study, which is published in the journal Perception, could help in the diagnosis of CFS, as the findings suggest that there are visual system abnormalities in people with ME/CFS that may represent an identifiable and easily measurable behavioural marker of the condition.
The Summerside Art Club has taken over the Eptek Centre with an all-new show, entitled “Nostalgia,” bringing to life memories and interpretations of artists in a dazzling display.
Liana Brittain, a member of the club, suffers from Fibromyalgia, a complex chronic pain disorder that affects her physically, mentally and socially.
She discovered “zentangle” as a therapeutic way to relax and intentionally facilitate a shift in focus and perspective.
“Zentangle was formed when a yoga instructor and artist combined their abilities to create a healing experience,” explained Brittain. “So I adopted this style of artwork in order to help maintain my Fibromyalgia (at a lower level) and how much chronic pain I experience at a time.”
Intricate patterns are drawn by Brittain and then coloured and shaded to create a three-dimensional effect. Her watercolour painting, entitled “Once Upon a Time,” represents a page in a child’s fairy-tale book.
“It’s a good therapeutic experience,” she added. “And it took me around two or three weeks to complete.”
Sleep Improvement for Fibromyalgia Sufferers Possible, Study Shows
Posted on November 23, 2015
A new drug being tested in clinical trials to treat fibromyalgia, called Tonmya, is showing promise for sleep improvement and pain reduction.
Tonmya is being evaluated in the 500-patient Phase 3 AFFIRM study in fibromyalgia. The primary outcome measure for this study is a pain responder analysis, which basically means patients report a minimum of a 30% reduction in pain from their baseline after undergoing treatments for 12 weeks.
The drug is taken at night daily, and researchers are seeing that patients are seeing improvements in sleep.
“Our new analyses of the BESTFIT data show that those patients who reported the greatest improvement in sleep quality were the most likely to experience pain relief,” said Seth Lederman, M.D., Tonix’s chairman and CEO. “We also observed that the group treated with Tonmya was approximately twice as likely as placebo-treated patients to be in the top third of reported sleep quality improvement. Among all patients in BESTFIT who ranked highest in reported sleep quality improvement, twice as many Tonmya-treated patients experienced at least a 30% improvement in their pain as compared to those treated with placebo.”
In a public talk in Edinburgh on Monday [16 November 2015], psychologist Professor James Coyne declared the “moral equivalent of war” on the practices and assumptions that, he said, have allowed the “bad science” of the PACE trial to go unchallenged by scientists and the media.
The authors of the UK’s £5 million PACE trial have claimed that it showed that cognitive behavioural therapy and graded exercise therapy were beneficial for patients with chronic fatigue syndrome. Patients have criticised the trial’s methodology since its publication but criticisms have been dismissed by the study authors as reflecting “the apparent campaign to bring the robust findings of the trial into question.”
Professor Coyne’s attention was drawn to PACE by the authors’ latest claims, made in a recent Lancet Psychiatry paper, that long-term follow-up of patients confirmed these benefits. Coyne published a detailed blog post condemning the paper as “uninterpretable” and as having used “voodoo statistics” in a failed attempt to correct for “fatal flaws.”
I have been in denial that the holiday season is coming up so fast, but Thanksgiving is next week, so I need to face facts: it's time to start my holiday shopping. Here in the U.S., people get whipped into a shopping frenzy before they've even digested their turkey dinner on Thursday.
I'm sure most of us won't be standing in lines outside stores at 5 am on Black Friday, but if you're like me, you probably do most of your shopping online. I do plan to take advantage of the sales and discounts on Cyber Monday (November 30 this year). I can usually get almost all of my holiday shopping done online, with a quick stop at the drugstore or Target for stocking stuffers.
Did you know that you can donate to your favorite charities and medical research organizations while online shopping...without spending a dime? There are several ways to do this. In each case, you choose the organization to donate to, and the online store donates a percentage of your purchase to them (the amount varies by store), so it costs you nothing! I usually choose the Solve ME/CFS Initiative because they have spearheaded and financed some of the most important, ground-breaking research in our field and have been at it the longest, since 1987. You can look for your favorite charity or organization and choose whichever one is important to you.
A new study reveals that the path to reducing fibromyalgia pain does not have to be complicated. Researchers focused on a group of female fibromyalgia patients who were able to decrease their pain by simply walking. Previous studies have shown that exercise can have a positive impact on patients who are dealing with fibromyalgia. Now, more research backs up the idea that staying active is essential.
Decreasing pain through exercise
Researchers at the University of Iowa focused on female fibromyalgia patients and analyzed the impact of exercise on their pain levels. They found that increasing activity levels helped the women reduce their pain. Although it is not easy for many patients to stick to an exercise program, the benefits are too important to ignore.
Researchers recognize that fibromyalgia patients often struggle with the initial pain associated with a workout. Their stiffness, fatigue, aches, tenderness, cramps, spasms and other symptoms make it difficult to exercise. However, they still encourage fibromyalgia sufferers to try an exercise program and stay with it.
It may be easy to write a prescription for opioids in hopes that they will do the trick for patients struggling with fibromyalgia pain. But the best path towards effective analgesia may not require medication at all.
This isn’t the first time that research has pointed out the benefits of exercise as a form of treatment for women with fibromyalgia. A study released earlier in the year found that patients who took more steps each day experienced less pain. However, in the new trial researchers used a larger population pool to make their case in Arthritis Care & Research, and they succeeded.
A total of 468 women with fibromyalgia were evaluated and levels of pain were recorded with several methods including algometry, numeric rating scale, visual analog scale, and the bodily pain subscale on the Short Form 36 health survey. The authors also looked at chronic pain self-efficacy and pain catastrophizing to determine patients who may exaggerate what they were actually feeling. The Senior Fitness Test battery and handgrip dynamometry were used to measure physical fitness – made up of aerobic fitness, muscle strength, flexibility, and motor agility – and average global fitness profile.
We can probably all agree that starting a business is damn hard work. The amount of energy most of us put into developing our ideas, getting past those weird money/marketing feels, and putting ourselves out there, not to mention actually doing our work and all of the admin that goes with it can add up to one of the biggest (and most exciting) challenges many of us will ever face.
But what if you also add disability and/or illness into the mix? What if you can’t rely on those energy levels at any given time, or your body lets you down just when your business needs you to show up? Is it really possible to head down the road to business ownership when faced with such roadblocks?
Virtual assistant (VA) Lizzy Goddard is familiar with the additional challenges chronic illness can bring to entrepreneurship. Having lived with chronic fatigue syndrome for most of her adult life, she found that working for herself actually helped her to design a life that worked with her body’s needs. She has found simple and practical ways to manage two small businesses alongside her body’s needs — firstly as the creator of The Pillow Fort, an online community for young people with chronic illness, and later as a VA, a freelancing gig that accidentally became her main source of income.
In this installment of Follow Your Arrow, Lizzy talks us through her day-to-day life as a solopreneur, how entrepreneurship has transformed her outlook on life, the inspirational power of women’s business communities…and doing business in a onesie.