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This is the website of the Wellington Region ME/CFS Support Group Inc.

If you find any errors on this website, or missing pages (404), please email us and let us know.

Metabolism in Fibromyalgia (now featuring Leptin)

This is a fantastic article for our Fibro Friends. It features a bit about Leptin, which is 2014′s biggest lead.

Article by Adrienne Dellwo

Many fibromyalgia experts have long believed the condition is associated with an abnormal metabolism, which can lead to weight problems and difficulty losing weight. A new study gives us an idea what may be going on.

Researchers looked at indicators of what’s called “adiposity,” which is the clinical term for being overweight or obese. These include:

  • Leptin: a protein produced by fat in the body and believed to regulate fat storage, and
  • Acylated ghrelin: an enzyme that stimulates your appetite.

Researchers examined leptin and acylated ghrelin levels in a small group of women with fibromyalgia as well as a control group, and compared the results to the women’s pain intensity and physical activity levels.

They say the fibromyalgia group had higher leptin and lower acylated ghrelin levels than controls. The leptin levels were not linked to the weight of the fibromyalgia women, which is unusual and leads researchers to conclude that it’s somehow linked to symptoms.

Fibromyalgia & Metabolism

For years, we’ve had a group of fibromyalgia experts who’ve said we had metabolic problems that contributed to weight gain and made it especially hard for us to lose weight. Meanwhile, the rest of the medical community has told us that we’ll feel better if we lose weight. However, the researchers who churn out studies showing increased weight leads to increased pain and disability don’t ever seem to offer solutions – or even ask why we’re overweight to start with.

Why would we be overweight? So many reasons!

First, in the U.S., a whole lot of people – including those without health problems – are heavier than the medical community says they should be. On top of that, you’d expect a group of people with chronic pain to be on the heavy side: pain limits function and leads to being more sedentary. Then, consider that a large portion of us are women in child-bearing or post-menopausal years. If you’ve just had children, you’re more likely to be heavy than before having kids. And if you’re post-menopausal, it’s natural to put on a few pounds.

Fibromyalgia is also associated with thyroid disease and, to a lesser degree, problems with blood-sugar regulation. Those both cause weight gain. So do some of the drugs we’re prescribed.

Now, add to that evidence that we have high levels of a protein responsible for fat storage. What does that mean, exactly?

Picture a waterfall. Say ten people go out to catch water in buckets and dump that water into a pool. That’s a healthy person. Now imagine that ten more people join them. The pool fills up twice as fast even though the waterfall hasn’t changed, right? That’s us.

So yes, as a group, it’s probably true that we’re heavier than our healthy counterparts, and possibly even heavier than similar disease groups (i.e., people with lupus or rheumatoid arthritis.) I’d imagine it’s true that extra weight leads to even more pain, as our muscles and connective tissues work harder to perform basic functions.

My hope is that this kind of research will continue and eventually lead not only to answers, but to treatments that regulate our metabolisms. * Source

If he can do that, what’s your excuse?!

“If he can do that, what’s your excuse?!”

Some people need to understand that there’s a big difference between a handicap and a disabling chronic illness. As much as I admire those people completing marathons, despite missing one or both legs, if they had a disabling chronic illness, they’d likely struggle just to get in an occasional run around the block…Jim Shelton


The Poverty of Severe ME + Other Articles

The Poverty of Severe ME – Greg Crowhurst

The poverty entered into here is a stark and complete poverty.

It is a poverty on all levels: poverty of wealth – unable to earn money you rely on benefits which are not easily gained, or easily kept , neither do they provide for more than the minimum of life.

Poverty of pride, you have to sacrifice all self esteem as you search more and more for charitable grants to meet your basic needs, crushed by rising prices and dwindling funds

Poverty of family, you become alienated from their normal lives ,  they  shut you out, they get on with normality rather than enter into the path of suffering you endure moment by moment, too careless of your feelings, too busy in their own lives, too angry with you for not being who they want and expect you to be

Poverty of neighbour, you are unable to maintain contact, reciprocate favours, join in social events you become isolated even from those in closest proximity.

Poverty of friendship, people simply get fed up with your lack of presence, with the difficulties of communication, they cannot and do not understand  nor do they necessarily want to be that flexible, you become less visible, they move on and forget you, you become at best a Christmas card or birthday card, more easy to maintain than any genuine relationship that has costs and complexities involved.

Poverty of local community, you are  not seen or heard, not being able to engage on their terms, you become invisible.

Poverty  of religion,  the religious who do not know God, who  know religion, who are so  caught up in self -importance, in ritual, that they cannot reach out beyond a general do good feel good factor that meets no real need, do not visit.  Church becomes an impossibility to attend, prayer groups become an impossibility to  attend.

Poverty  of social norms - you simply cannot comply with normal expectations, meetings, deadlines, red tape, procedures, social gatherings, social events .

Poverty of state support , the spin around chronic illness, the denial of what the state is dong to collude with big industry rather than meeting honestly the challenge of a heart – breaking tragic physical illness is staggering and hard to believe .

Poverty  of  understanding , many people simply do not understand the vast complexity of need nor the physical suffering a chronically ill  person  experiences ;  they are thought of as people who have made themselves ill due to wrong thought and laziness,  considered scroungers on the welfare state, completely denied access without huge battles to get their basic needs and rights me.

Poverty of kindness ,  there is a shocking ignorance in the general public even in those closer to a person, that leads to unkindness, thoughtless gestures, exclusions, hurtful comments and all because  of ignorance and lack of a genuine desire to enter into this place of pain and stand by you in this very painful place – few bother, few dare to care enough, many are thoughtless or deliberately unkind and uncaring.

Here we live,  on the edge of society, on the edge of heath care provision. On the edge of surviving. — Greg Crowhurst

Other Articles of Interest

METHOD OF DIAGNOSING AND TREATING EPSTEIN BARR VIRUS-BASED MYALGIC ENCEPHALOMYELITIS CHRONIC FATIGUE SYNDROME PATIENTS: A method of diagnosing a subset of Epstein Barr Virus, Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME/CFS) patients through a multi-prong clinical/serological analysis is provided wherein Epstein Barr Virus Abortive Lytic Replication (EBV) is determined as the specific causal agent through the use of serum antibodies to EBV encoded dUTPase and serum antibodies to EBV DNA Polymerase as molecular markers. A method of treating patients diagnosed with Epstein Barr Virus Abortive Lytic Replication (EBV), Myalgic Encephalomyelitis Chronic Fatigue Syndrome (ME/CFS) with specific antiviral nucleosides is also provided, to alleviate the condition. (article found here)

Leptin: Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin. (article found here)

Low Dose Naltrexone: “We discuss the concept of using low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain conditions that are suspected to be associated with inflammatory processes.” (article found here)

Personal Blog: D-Ribose: Why it Might Work (article found here)

Study: Rituximabstudy with 152 patients probably to start this autumn (English translation at bottom of page, so keep scrolling!) (article found here)

Johns Hopkins Children’s Center paediatrician Peter Rowe, M.D., has received the 2014 research award from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) for his clinical and scientific work on chronic fatigue syndrome and related disorders. (article found here)

Neuroinflammation in Chronic Fatigue Syndrome: Direct Evidence at Last: New research provides evidence of neuroinflammation in chronic fatigue syndrome (ME/CFS,) thus providing support for the alternative name myalgic encephalomyelitis. (article found here)


How you can Help Us

We’ve updated our page to reflect how YOU can help WellMe — be it through advocacy and sharing your experience, volunteeringregular donations or corporate sponsorship.

With the ME/CFS International Awareness Day on May 12th coming up, we need YOU more than ever!

Share with your friends, family, coworkers and maybe even your own doctor.


Ubiquinol use for improving fatigue and tiredness

Ubiquinol was brought up at the Support Group Meeting on Monday. Does anyone in the community have any experience with this supplement?

There is debate about whether you need to take it with a form of fat or with Creatine.

As always, consult with your physician or specialist.

This is a press release for a funded study of Ubiquinol. For Ubiquinone (Co-Q10) vs Ubiquinol please see here.


August 6, 2013

Effect of Ubiquinol (reduced form of Coenzyme Q10) on Chronic Fatigue Syndrome (CFS) in double-blind placebo controlled study—Collaborative research with Osaka City University—
Kaneka Corporation (headquarters: Osaka, Japan: President: Mr. Kimikazu Sugawaru) confirmed the effect of the Reduced form of Coenzyme Q10 (hereafter, Ubiquinol) in improving the Chronic Fatigue Syndrome (CFS) sowing long-lasting fatigue, tiredness, etc. with unknown cause. This research was conducted in collaboration with Special Appointment Prof. Yasuyoshi Watanabe, Graduate School of Medicine, Osaka City University, Osaka, Japan (President and Chairperson of the board of directors: Dr. Yoshiki Nishizawa), and Director of Center for Life Science Technologies, RIKEN, Kobe, Japan)

These results were presented at the 9th Annual Meeting of the Japanese Society of Fatigue Science held at Akita, Japan on June 7-8 2013.

This is a double-blind placebo-controlled study. Thirty one patients were divided into two groups (Active; p=17, placebo: n=14) and were supplemented with Ubiquinol (150 mg/day) or placebo capsules for 3 months. Fatigue, sleep quality and depression, oxidative stress and antioxidative activity and arithmetic tasks were evaluated before and after 3 months of the supplementation.

As the results, frequency of nocturnal awakening was significantly decreased and performance of arithmetic task was improved significantly after supplementation. Plasma Ubiquinol concentration was also increased significantly. Since these results were accorded well with those obtained in our open-labe study previously conducted to evaluate the effect of Ubiquinol in CFS patients at daily dose of 150mg for 8 weeks, the clinical effect of Ubiquinol on CFS was confirmed.

ME-CVC Vereniging

Recently we were contacted by a Dutch ME Society (ME-CVC Vereniging) looking for information on what NZ is doing to help people with ME. They’re a fantastic society packed with such lovely members but what makes them so very special is their Youtube Channel.

They do weekly segment with various worldwide doctors on all sorts of aspects of ME and have other recorded interviews. You can then find all sorts of information on their web page. A hugely influential European agency which is one to watch!

Youtube Channel: https://www.youtube.com/user/WetenschapvMEcvsVer/featured

This Week’s interview: https://www.youtube.com/watch?v=tIIHfdmUwCQ&feature=youtu.be

Facebook: https://www.facebook.com/ME.cvs.Vereniging

Website: http://www.me-cvsvereniging.nl/english-page

Levels of Inflammation in Brain higher in ME/CFS patients

{Jen} I guess my questions is — how hard is it to get a PET scan for NZ patients? Would it make a difference in getting diagnosis, treatment or benefit services?

Toward a clearer diagnosis of chronic fatigue syndrome

Researchers at the RIKEN Center for Life Science Technologies, in collaboration with Osaka City University and Kansai University of Welfare Sciences, have used functional PET imaging to show that levels of neuroinflammation, or inflammation of the nervous system, are higher in patients with chronic fatigue syndrome than in healthy people. SOURCE

Chronic fatigue syndrome, which is also known as myalgic encephalomyelitis, is a debilitating condition characterized by chronic, profound, and disabling fatigue. Unfortunately, the causes are not well understood.

Neuroinflammation—the inflammation of nerve cells—has been hypothesized to be a cause of the condition, but no clear evidence has been put forth to support this idea. Now, in this clinically important study, published in the Journal of Nuclear Medicine, the researchers found that indeed the levels of neuroinflammation markers are elevated in CFS/ME patients compared to the healthy controls.

The researchers performed PET scanning on nine people diagnosed with CFS/ME and ten healthy people, and asked them to complete a questionnaire describing their levels of fatigue, cognitive impairment, pain, and depression. For the PET scan they used a protein that is expressed by microglia and astrocyte cells, which are known to be active in neuroinflammation.

The researchers found that neuroinflammation is higher in CFS/ME patients than in healthy people. They also found that inflammation in certain areas of the brain—the cingulate cortex, hippocampus, amygdala, thalamus, midbrain, and pons—was elevated in a way that correlated with the symptoms, so that for instance, patients who reported impaired cognition tended to demonstrate neuroinflammation in the amygdala, which is known to be involved in cognition. This provides clear evidence of the association between neuroinflammation and the symptoms experienced by patients with CFS/ME.

Though the study was a small one, confirmation of the concept that PET scanning could be used as an objective test for CFS/ME could lead to better diagnosis and ultimately to the development of new therapies to provide relief to the many people around the world afflicted by this condition. Dr. Yasuyoshi Watanabe, who led the study at RIKEN, stated, “We plan to continue research following this exciting discovery in order to develop objective tests for CFS/ME and ultimately ways to cure and prevent this debilitating disease.”


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