The Real Reason ME/CFS and FM Funding Stinks

... it appears that many funding decisions are still often very much symptom based. Even very rare disorders that cause death or visibly crippling symptoms get equal or more funding than diseases that cause widespread distress and produce major economic losses but have largely invisible and mostly discounted symptoms.



The NIH's Blindspot: The Real Reason ME/CFS and FM Funding Stinks

This is your brain on fried eggs: Brain, motivation and eating a high-fat diet

High-fat feeding can cause impairments in the functioning of the mesolimbic dopamine system, according to new research. This system is a critical brain pathway controlling motivation. These findings may have important health implications.



This is your brain on fried eggs: Brain, motivation and eating a high-fat diet

Am I fat? Many of today's adolescents don't think so: Body weight perceptions changing in the US

Admitting that you have a weight problem may be the first step in taking action, but a new study published in the American Journal of Preventive Medicine found that an increasing number of overweight adolescents do not consider themselves as such.



Am I fat? Many of today's adolescents don't think so: Body weight perceptions changing in the US

ME and CFS By Mary Schweitzer

This disease was first documented in a cluster outbreak in Los Angeles in 1934, in the middle of a polio outbreak.



It was given the name Atypical Polio, and through other cluster outbreaks it either was called that, or sometimes Icelandic Disease for an outbreak there.



In 1955, when the Polio vaccine supposedly eliminated polio (not quite), there were three major cluster outbreaks in the UK.



The most famous was an outbreak among medical personnel at Royal Free Hospital in London. That ended up being given the name Myalgic Encephalomyelitis (actually, originally benign Myalgic Encephalomyelitis because it didn't immediately kill you - and WHO still includes the word benign, tho it was soon dropped by physicians because, as Ramsay said:



"There's nothing benign about ME"



ME and CFS By Mary Schweitzer

One night of sleep loss can alter clock genes in your tissues

Constant nights of sleep loss must be having an adverse effect on those of us with ME/CFS and/or FM:

Swedish researchers at Uppsala University and the Karolinska Institute have found that genes that control the biological clocks in cells throughout the body are altered after losing a single night of sleep, in a study that is to be published in the Journal of Clinical Endocrinology and Metabolism.

 One night of sleep loss can alter clock genes in your tissues

Anti-Inflammatory Superfoods For Arthritis

The benefits of a high fiber diet are manifold, and people have known this for a very long time. The healthy nutrients from high-fiber fruits, vegetables and grains can help to build better overall health, but there’s more to it than that; high-fiber diets have been linked to reduced inflammation as well.



Anti-Inflammatory Superfoods For Arthritis



NB: Fiber is also good for weightloss and an anti-inflamatory should also be beneficial in those with other chronic illnesses, such as fibromyalgia and ME/CFS.

The putative role of viruses, bacteria, and mold in CFS

The presence of active, reactivated, or even latent Herpes virus could be a potential source of intractable fatigue accompanied by profound physical and or cognitive disability in some patients, and the same may be true of persistent Parvovirus B12 and mycoplasma infection. A history of chronic mold exposure is a feasible explanation for such symptoms, as is the presence of B. burgdorferi. The complex tropism, life cycles, genetic variability, and low titer of many of these pathogens makes their detection in blood a challenge. Examination of lymphoid tissue or CSF in such circumstances may be warranted.



The putative role of viruses, bacteria, and mold in CFS

Her Brain Was On Fire: A Neuroinflammation Story

This is not a story about chronic fatigue syndrome or fibromyalgia but it could be. The subplots running through it – a woman with the mysterious illness, the predisposition to look for a psychological cause, the negative test results, the misdiagnoses, the strange “brain” symptoms – could be patched onto many ME/CFS and FM stories, and indeed other mysterious illness stories.



Susannah’s story shows how bad neuroinflammation – a possible cause of chronic fatigue syndrome and/or fibromyalgia – can get, how much remains to be learned about the brain and at the same time how quickly the medical researchers are moving forward. Ultimately her story provides hope for people with mysterious central nervous systeme disorders.



Her Brain Was On Fire: A Neuroinflammation Story

The Real Reason Chronic Fatigue Syndrome and Fibromyalgia Get Lousy Funding

The underpowered name, the vague definition, the broken funding mechanism, the lack of FDA approved drugs, the inconsistent study results, the unfortunate leaders, the lack of major researchers…they’ve all contributed to the funding problems in ME/CFS, but I assert they are all symptoms of the problem, not the cause. I assert that, absent fixing our crucial problem, that even solid advocates at top positions in the federal government would have had trouble getting us far.



Why do I think that? For one, because migraine has a good name, it’s centered in the right Institute, it has several drugs approved for it, it’s well-defined, pathophysiological disorder that has good researchers associated with it and it still gets lousy funding.



Something deeper is going on – the fixing of which is critical – and which would clear the way for abundant funding. Not fixing this issue, on the other hand, will guarantee that, whatever increases in funding occur, ME/CFS will probably keep on in its petty funding pace. It will always, like migraine, have a low funding ceiling relative to other major disorders.



The Real Reason Chronic Fatigue Syndrome and Fibromyalgia Get Lousy Funding

South Coast Model Railway Club Exhibition 2015

 

Yesterday, we paid a visit to the South Coast Model Railway Club Model Railway Exhibition at Arnewood School, in New Milton, the high spot of which, for us, was the Oakwood layout (pictured), described as a freelance layout, built for the exhibitor's grand-daughter.

Benefit Claimants Should Not Be Forced To Live In Fear

We all know that without any form of income via wages, benefits or savings that the inevitable outcome is almost certainly homelessness, hunger and poverty – even crime.

Common sense tells us this. So why do we believe that a person with a serious and recognised illness, who we know cannot work, should be put into the position of living in fear of this happening to them? Why are we pushing people into the position of feeling that the only way out is to take their own life?



Benefit Claimants Should Not Be Forced To Live In Fear

Research shows graded exercise therapy causes exercise intolerance and makes things worse in ME/CFS

... new analysis suggests that CFS patients may develop exercise intolerance as demonstrated by reduced total activity after 4-10 days.

The inability to sustain target activity levels, associated with pronounced worsening of symptomology, suggests the subjects with CFS had reached their activity limit.



Research shows graded exercise therapy causes exercise intolerance and makes things worse in ME/CFS

Budget News, ESA Death Statistics And DLA In Hospital

The budget was definitely bad news for sick and disabled claimants, but not as bad as many had feared. At least we were spared the taxing of disability benefits or forcing every claimant to pay the first 10% of their housing benefit.



But it was bad enough.



The four year freeze on working age benefits will leave many people struggling to survive. The decision to change support for mortgage interest payments from a benefit to a loan, with many of the details left unclear, is causing huge concern.



And the ending of the work-related activity component for new ESA claimants will not only hit people becoming sick or disabled in the future. It may also mean many current ESA claimants will be too terrified to try out paid employment, for fear they will not be able to return to ESA at the same rate if their attempt fails.



Watching the Labour party descend into chaotic infighting, as leadership hopefuls row over whether to support the budget or not, is also proving to be a deeply dispiriting spectacle for many of our members.



15 July 2015 newsletter

Chronic fatigue breakthrough offers hope for millions

The discovery – which sprang from a serendipitous observation – offers more than just the promise of a much-needed treatment. It also suggests that the symptoms are somehow caused by antibodies originally produced to fight off an infection. The researchers speculate that they might disrupt blood flow, leaving muscles drained of energy.

If correct, this brings the scientific story full circle. CFS was initially suspected to be a “post-viral” syndrome – the lingering after-effects of an infection with Epstein-Barr. More importantly, it could offer people diagnosed with CFS both physical relief and psychological closure.



Chronic fatigue breakthrough offers hope for millions - New Scientist

Report Finds Graded Exercise Therapy Worsens Symptoms of ME/CFS

"The ME Association concludes that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS. CBT courses based on the model that abnormal beliefs and behaviours are responsible for maintaining the illness, have no role to play in the management of ME/CFS and increase the risk of symptoms becoming worse." The ME Association concludes that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

Report Finds Graded Exercise Therapy Worsens Symptoms of ME/CFS

Newly-found gut virus 'abundant in humans'

"Exploring genetic material found in intestinal samples, the international team uncovered the CrAssphage virus. They say the virus could influence the behaviour of some of the most common bacteria in our gut. Experts say these types of viruses, called bacteriophages, have been shown to play a role in chronic diseases."

Newly-found gut virus 'abundant in humans'

A Muscle Brain Connection in Chronic Fatigue Syndrome Revealed

"People with Chronic Fatigue Syndrome have weakened muscles and, let’s face it, weakened brains as well. They can’t exercise worth a darn and their ability to focus, to process information quickly and to retain it, is shall we say, blunted. One would think those two problems are not related, but a recent Belgium study suggests they are intimately related."

A Muscle Brain Connection in Chronic Fatigue Syndrome Revealed

Limited Capability: Why does stigma still surround ME?

"To end the stigma of ME and the shocking neglect and even abuse towards severe ME we have to knock the deconditioning theory on the head once and for all. We need to change the received wisdom on ME within the medical profession. It won't be easy but it looks like at last we science on our side."

Limited Capability: Why does stigma still surround ME?

Why do we call social security payments 'benefits'? They are a right, not a reward

We’ve become so used to the term ‘benefits’, we can’t see how misleading and dangerous it is. It’s misleading because in any other context, ‘benefit’ means advantage or profit; something extra; a special payment or gift, perhaps to reward good behaviour. It’s dangerous because when we frame social securities in this way, we move away from seeing them as basic rights and start talking about them as bounteous rewards. And consequently, we have paved the well-trodden path for discussions about incentives, who deserves what and who doesn’t.



Why do we call social security payments 'benefits'? They are a
right, not a reward

8 ‘Helpful’ Things That Don’t Really Help People With Disabilities

“The thing is, people without visible disabilities… often hear ‘But you don’t look sick’ as an excuse for the person saying it to not take the condition seriously or not give proper accommodations. In those cases it’s not a compliment, it’s an accusation. It happens way more often than you’d expect, and since it’s not just annoying but often an obstacle to actually getting the help needed to get on with your life, it gets old fast.”



8 ‘Helpful’ Things That Don’t Really Help People With Disabilities

The Link Between Magnesium and RLS

Recent research has uncovered a possible link between magnesium deficiency and RLS symptoms. Could a simple supplement help you get a better night’s sleep?



The Link Between Magnesium and RLS

Magnesium: An Essential Supplement for ME/CFS

Because oral magnesium is difficult to absorb, the forms most frequently recommended are magnesium citrate and magnesium glycinate. Magnesium citrate dissolves in water, which makes it more bioavailable than most other forms of magnesium (such as sulfate or oxide, both of which are inorganic and poorly absorbed



Dr. Paul Cheney has observed that magnesium glycinate causes the least intestinal upset and is the most easily absorbed.15 The usual recommended dosage is 200 to 400 mg/day taken with food, although CFS/ME patients are cautioned to start with a smaller dose and increase it gradually. Intramuscular injections of 1 cc of magnesium sulfate (50%) or magnesium chloride can be administered once or twice a week. Because of magnesium's effect on heart function, the first injection should be performed in a physician's office. The main drawback of injected magnesium is that the injections are painful. The simultaneous administration of vitamin B12 or lidocaine helps relieve the pain of the injection. Because magnesium is a cathartic, high doses can cause diarrhea. In patients prone to gastrointestinal upset, a low dose is normally recommended.



Most people with ME/CFS who take magnesium, whether oral or injected, report increased stamina and energy. Many include better sleep as an additional benefit (most likely due to magnesium's muscle-relaxing effects).



Magnesium: An Essential Supplement for ME/CFS

Qi gong, Chronic Fatigue Syndrome & Telomerase Activity

The most significant studies that have investigated the benefits of Qi gong, were carried out by a group in Hong Kong. Here we report on three studies, which show improvements in mental and physical symptoms of CFS.

The first study investigated the effect of Baduanjin Qi gong on sleep, fatigue, anxiety and depression in patients with CFS. Patient volunteers were given either sixteen 90 minute Qi gong sessions over 9 weeks or put on a waiting list. Levels of anxiety and depression, sleep quality, and fatigue were assessed before the start of treatment, immediately after treatment and then 3 months after treatment. Results showed that there were significant improvements in patients perceived sleep quality as well as reduction in anxiety and depressive symptoms.



Qi gong, Chronic Fatigue Syndrome & Telomerase Activity



ED: I tried Qi Gong, but couldn't manage it because I suffer so badly with orthostatic intolerance and the slowness of the movements made it difficult for me remain upright. I could, however, see how it could be useful if you can get over that obstacle.  

Body Temperature and Obesity: New Study Suggests Connection

The study found that obesity is associated with a significant reduction of body core temperature during daytime hours. Journal Editor Francesco Portaluppi explains that the reduced ability of obese people to spend energy as heat compared to lean individuals could result in long term weight gain (about 2 kg (4.5 lb.)) per year, depending on the lifestyle.



Body Temperature and Obesity: New Study Suggests Connection

Spinal cord neurons that control pain and itch

The spinal cord transmits pain signals to the brain, where they are consciously perceived. But not all the impulses arrive at their destination: Certain neurons act as checkpoints and determine whether a pain signal is relayed or not. Researchers from UZH identified these neurons and their connections. Moreover, they developed means to specifically activate these neurons, which reduces not only pain -- but astonishingly also alleviates itch.



Spinal cord neurons that control pain and itch

26 Healthy Habits That Really Aren't So Healthy

From magazine headlines to wise words from our mother, we’re constantly bombarded with “tips” to keep our health in check. But before drowning in diet soda and daily showers, reassess some of these behaviors that may be doing more harm than help.



26 Healthy Habits That Really Aren't So Healthy

PLOS ONE: The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

ME/CFS patient characteristics are different to those of the population in several aspects as seen in Table 2. First of all, 87.2 per cent of ME/CFS patients are women. Furthermore, the patients have 20 percentage points fewer relationships than the average population, much higher unemployment, with only 7.6 per cent employed (population 52.2 per cent) and a higher proportion of disability pensioners– 52.2 per cent (population 5.2 per cent) In addition, ME/CFS patients in this study have 2.9 numbers of chronic illnesses on average (co-morbidity)–more than twice as high as the general population. Self-reported long-term illness, as defined previously, is as high as 89.0 per cent, contrary to a population estimate of approximately one-third. On the other hand, ME/CFS patients are higher educated than the reference population.



PLOS ONE: The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

Childhood Disrupted - How Biography Becomes Biology: the Fibromyalgia and ME/CFS ACE Poll

A key takeway for ME/CFS and FM patients? It’s likely the immune system at work and that makes sense. The immune system jumps in during any stressful situation and it’s got a photographic memory. However your immune system got upset (childhood diversity, a later infection or both) Donna Jackson Nakazawa’s description of the process that occurs suggests she’s hitting on something that contributes to ME/CFS and FM.



Childhood Disrupted - How Biography Becomes Biology: the Fibromyalgia and ME/CFS ACE Poll

How the stress hormone cortisol reinforces traumatic memories

"The stress hormone cortisol strengthens memories of scary experiences. However, it is effective not only while the memory is being formed for the first time, but also later when people look back at an experience while the memory reconsolidates. Researchers suggest that the results might explain the persistence of strong emotional memories occurring in anxiety and Post-Traumatic Stress Disorder (PTSD). "

How the stress hormone cortisol reinforces traumatic memories

Junk Science Blogs: 4 Signs You May Be Unknowingly Following One

With so many self-declared “evidence-based” websites floating around, what (and who) should you believe – or not?

How do you know you are reading quality-verified information? Who can you trust for accurate data suited to your needs? Who filters the junk from the science?

These are a few questions you should be asking yourself constantly.



Junk Science Blogs: 4 Signs You May Be Unknowingly Following One

Fluge & Mella’s pre-trial study highlights life-changing potential of rituximab

Dr Øystein Fluge and Professor Olav Mella have published their new study in PLoS ONE. And though the study was not a blinded, placebo-controlled trial, the results are further evidence that rituximab is beneficial in some ME/CFS patients, and potentially life-changing for a substantial minority. The findings also give important new insights into the optimum dosing schedule to maintain those benefits in the long run.



Fluge & Mella’s pre-trial study highlights life-changing potential of rituximab