Flintshire draft well-being assessment – your views invited

Flintshire Public Services Board has published its draft well-being assessment.

The first step required of public sector partners is to make a deep analysis of the conditions of ‘well-being’ in the communities they serve by using all available data.  The second step is to agree a ‘Local Well Being Plan’ for collective action.

The Assessment provides a contemporary picture of life and well-being in Flintshire.  The themes included in the assessment will be things that matter to you.  They would like residents to tell us if it paints a picture of the Flintshire you recognise.

Draft Assessment of Well-being for Flintshire – Summary document  Cymraeg

Assessment of Well-being for Flintshire – Area Profiles   Cymraeg

Draft Assessment of Well-being for Flintshire – Full document   Cymraeg

Provide your feedback.  The closing date for feedback is Friday 31st March 2017.

 

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Dr Light’s video interview about his PEM research

Dr Podell’s blog, 9 January 2017: Powerful Proof that Symptoms of Chronic Fatigue Syndrome and Fibromyalgia are REAL and MAINLY PHYSICAL

Dr Rich Podell interviewed Dr. ALan Light, Ph. D by Skype in a three part video series.

His research is among the very most innovative and important in the fields of chronic fatigue syndrome and Fibromyalgia. He, along with Lucinda Bateman, M.D. and colleagues from the University of Utah School of Medicine, has successfully conducted one study out of a very few that identify an objective laboratory marker which closely correlates with the patients’ “subjective” complaint of prolonged fatigue after modest exertion. This proves that the patients’ subjective reports of post-exertional malaise (PEM) are honest, real and based on physical events.

More details on this study and its significance can be found in the three 10-minute videos and text.

Latest research:

Neural Consequences of Post-Exertion Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Dane B. Cook, Alan R. Light, Kathleen C. Light, Gordon Broderick, Morgan R. Shields, Ryan J. Dougherty, Jacob D. Meyer, Stephanie VanRiper, Aaron J. Stegner, Laura D. Ellingson, Suzanne D. Vernon, William S. Middleton in Brain, Behavior, and Immunity [published online: 17 February 2017]

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Australian researchers discover abnormalities in immune cell receptors in ME/CFS

Huffington Post Australia, by Luke Cooper, 22 Feb 2017: Queensland Scientists Make Chronic Fatigue Syndrome Research Breakthrough

The condition has been linked to abnormal immune system cells.

Queensland scientists have linked Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), to a dysfunctional immune system — proving for the first time that the condition does stem from the body rather than the mind.

Researchers from Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) told the Huffington Post Australia the breakthrough came through findings that showed abnormalities in immune cell receptors.

NCNED Co-Director, Professor Don Staines, said:

“We have discovered and reported for the first time abnormalities of a certain receptor in immune cells of the body and hence it’s likely to be in every cell in the body.

“What this is, is a defect in the receptor, which is a change in the gene transcription of these receptors, meaning they no longer function the way they should. What the receptors should do is to be able to transfer calcium from outside the cell to the inside.”

According to Staines, the discovery of abnormal calcium immune system cells affects CFS sufferers in three main areas of the body where CFS-related pain usually occurs — the brain and spinal cord, the pancreas and the stomach.

CFS is a debilitating, flu-like medical condition characterised not only by long-term fatigue but a whole host of other symptoms that limit a person’s ability to carry out daily life.

There is no cure or effective treatment for chronic fatigue and a lack of understanding of the disease within the medical community has led to many sufferers being misdiagnosed.

“This is huge because for the first time we have documented the pathology in this illness. Up until now people have not really understood the illness,” Staines said.

“This illness is very much under-diagnosed. We think about 1-2% of the population have this illness but it could be higher than that. This is a much more debilitating illness than people have realised.”

Queensland Science Minister Leeanne Enoch said the findings are an important breakthrough in understanding CFS and helping those who suffer from it, in a statement released on Tuesday.

“This discovery is great news for all people living with [CFS] and the related [ME], as it confirms what people with these conditions have long known – that it is a ‘real’ illness – not a psychological issue,” she said.

“The Griffith University breakthrough now means we have a target for therapeutic intervention, which is welcome news to the 250,000 Australians believed to be affected by CFS and ME.”

Staines told HuffPost Australia researchers have now turned their sights towards creating a test that could identify dysfunctional cells in sufferers and developing future laboratory drug trials that could limit the cost of the condition on families.

“People can go for years of getting different tests and these are very substantial costs to the Australian economy, and also there are big costs for families who have to stay home or be a carer,” he said.

“Now there’s a lot of scope to develop, design and use different drugs. We can use different samples of drugs in what we call in-vitro, and then we can test them based on predictions that they would be a benefit in this condition.”

The costs of CFS and ME diagnosis, treatment and management in Australia is estimated to be around $700 million annually, according to the Queensland Government’s statement.

The findings come after NCNED received $1.6 million in research funding from the Queensland Government and a $4 million grant from the Stafford Fox Medical Research Foundation.

Staines believes this breakthrough is now a step forward for sufferers.

“We now know that this is a pronounced dysfunction of a very critical receptor and the critical role that this has, which causes severe problems to cells in the body.” he said.

“We don’t know that we can necessarily cure the illness but we can help people lead a normal life.”

More info:

Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels, by T Nguyen, S. Johnston, L. Clarke, P. Smith, D. Staines, and S. Marshall‐Gradisnik in Clin Exp Immunol. 2017 Feb; 187(2): 284–293.
[Published online 2016 Nov 23]

Science alert, by Fiona McDonald, 22 Feb 2017: One of the Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked

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Stress & Anxiety Management Course Llandrindod Wells 1 Mar 2017

Stress & Anxiety Management Course 

3 week course (every Wednesday – 1st, 8th & 15th March) – booking essential

Time:  1.00 pm – 4.00 pm

Where:  Mid Powys Mind, Crescent Chambers, South Crescent, Llandrindod Wells

Cost:  FREE

For more information or to book your place please telephone Mid Powys Mind on 01597 824411 or email admin@midpowysmind.org.uk

Another course will start on 6 June.

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Neural consequences of PEM in ME/CFS

Research abstract:

Highlights:

  • Acute exercise affects symptoms, cognitive performance and brain function in ME/CFS.
  • Symptom provocation by exercise is a useful model to study post-exertion malaise.
  • Objective neurophysiological evidence of the phenomenon of post-exertion malaise.

Post exertion malaise is one of the most debilitating aspects of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, yet the neurobiological consequences are largely unexplored.

The objective of the study was to determine the neural consequences of acute exercise using functional brain imaging. Fifteen female Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients and 15 healthy female controls completed 30 minutes of submaximal exercise (70% of peak heart rate) on a cycle ergometer.

Symptom assessments (e.g. fatigue, pain, mood) and brain imaging data were collected one week prior to and 24 hours following exercise.

Functional brain images were obtained during performance of: 1) a fatiguing cognitive task – the Paced Auditory Serial Addition Task, 2) a non-fatiguing cognitive task – simple number recognition, and 3) a non-fatiguing motor task – finger tapping.

Symptom and exercise data were analyzed using independent samples t-tests. Cognitive performance data were analyzed using mixed-model analysis of variance with repeated measures. Brain responses to fatiguing and non-fatiguing tasks were analyzed using linear mixed effects with cluster-wise (101-voxels) alpha of 0.05.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients reported large symptom changes compared to controls (effect size ≥0.8, p<0.05).

Patients and controls had similar physiological responses to exercise (p>0.05). However, patients exercised at significantly lower Watts and reported greater exertion and leg muscle pain (p<0.05).

For cognitive performance, a significant Group by Time interaction (p<0.05), demonstrated pre- to post-exercise improvements for controls and worsening for patients. Brain responses to finger tapping did not differ between groups at either time point.

During number recognition, controls exhibited greater brain activity (p<0.05) in the posterior cingulate cortex, but only for the pre-exercise scan. For the Paced Serial Auditory Addition Task, there was a significant Group by Time interaction (p<0.05) with patients exhibiting increased brain activity from pre- to post-exercise compared to controls bilaterally for inferior and superior parietal and cingulate cortices. Changes in brain activity were significantly related to symptoms for patients (p<0.05).

Acute exercise exacerbated symptoms, impaired cognitive performance and affected brain function in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. These converging results, linking symptom exacerbation with brain function, provide objective evidence of the detrimental neurophysiological effects of post-exertion malaise.

Neural Consequences of Post-Exertion Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Dane B. Cook, Alan R. Light, Kathleen C. Light, Gordon Broderick, Morgan R. Shields, Ryan J. Dougherty, Jacob D. Meyer, Stephanie VanRiper, Aaron J. Stegner, Laura D. Ellingson, Suzanne D. Vernon, William S. Middleton in Brain, Behavior, and Immunity [published online: 17 February 2017]

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Snail venom compound ‘offers chronic pain therapy’

BBC news, 21 February 2017: Snail venom compound ‘offers chronic pain therapy’

Venom from a small snail could be used to develop a treatment for chronic pain, scientists from the US suggest.

Normally used to paralyse or kill its prey, the venom also contains a compound that appears to act as long-lasting pain relief.

In research on rats, the compound was still working three days later.

The findings meant it may be possible to create a new pain therapy for patients who had run out of options, the researchers said.

Most medicines for moderate to severe pain, called opioids, work by reducing the perception of pain.

They do this by attaching to specific proteins in the brain and organs of the body, called opioid receptors.

But the Rg1A compound found in the venom of a Conus regius snail, a native of the Caribbean, works in a different way using a new pathway.

Read the full article

University of Utah report: An alternative to opioids?

ITV report, 21 Feb 2017: Sea snail venom ‘could treat chronic pain’

Medicalnet, 21 Feb 2017: Compound from snail’s venom may offer alternative to opioids for pain relief

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Bridgend draft Well-being assessment – your views invited

Bridgend Public Services Board Assessment of Local Well-being Consultation Draft

The Public Services Board for Bridgend has put of all its evidence together into a draft assessment of well-being. The assessment was created to gain a better understanding of positive aspects within the local communities, what matters to people, and how the PSB can work together now, and in the future, to plan and deliver services. The PSB want to know if residents agree with the information gathered and what well-being factors are most important to you.

Download the document       Cymraeg

How to respond:
This consultation period will close the 19 March 2017. You can respond or ask further questions in the following ways;

01656 643 664    consultation@bridgend.gov.uk        Online

Communications, Marketing and Engagement,
Bridgend County Borough Council, Raven’s Court, Wing 3, Brewery Lane, Bridgend, CF31 4AP

Alternative formats are also available upon request.

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No such thing as retirement for older carers

Carers Trust article, 7 Feb 2017: No such thing as retirement for older carers, says new Carers Trust report

Older carers say they are now doing the hardest job they have ever done, with no option to ring in sick if they are not well. Just when older carers thought it was time to put up their feet and retire, many of the older generation are finding that there is no such thing as retirement.

Instead of retiring, they have become or will remain lifelong unpaid carers for their sick or disabled partner or adult children.

The Carers Trust have launched “Retirement on Hold”, a new report which highlights some of the challenges the older population are facing.

The report gives a snapshot of the battles some older people are now fighting, including caring for someone else when they have their own age-related illnesses.

Many carers aren’t prepared for caring and are struggling to find their way around the social care system, and some say by the time they’ve received vital information it is too late. They say the burden of caring has resulted in them being exhausted, frustrated and becoming sick themselves.

 

 

 

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Overview of vision problems in ME/CFS

ME Research UK article, 13 Feb 2017: Shifting focus

Problems with vision are relatively common among people with ME/CFS, the majority of whom report symptoms such as hypersensitivity to light, difficulties focusing, and dry eyes.

But despite their significant impact on quality of life, there is still a lack of scientific research into these symptoms, and they are not included in any clinical and diagnostic guidelines for ME/CFS.

Fortunately, scientists such as Dr Claire Hutchinson of the University of Leicester have recognised that this is an area worthy of study. Supported in part by grants from ME Research UK, Dr Hutchinson and her group have looked at a number of vision-related problems in ME/CFS.

Applying sophisticated eye-tracking techniques, they showed that patients have difficulties focusing on an object while ignoring irrelevant information, are slower than normal in shifting attention between objects, are slower and less accurate in their eye movements, and are vulnerable to pattern-related visual stress.

Furthermore, the group found that around 90% of ME/CFS patients reported a degree of eye pain and sensitivity to bright lights at least some of the time.

Also helping to fill this gap in our knowledge is a group from Antwerp in Belgium, which has recently published an interesting study on binocular vision in the American Orthoptic Journal.

The investigators carried out full orthoptic examinations on 41 patients fulfilling the CDC criteria for CFS and 41 healthy individuals matched for age and gender.

A series of tests looked at how the eye adjusts to keep focus on an object as it moves closer or further away, an adjustment that requires both vergence and accommodation.

Vergence is the simultaneous movement of the pupils of both eyes, either inwards (convergence) or outwards (divergence), while accommodation is the ability of the eye to change its focal length to maintain a clear image.

Compared with the control group, the patients in this study showed reductions in convergence, divergence and accommodation amplitude; i.e. all three factors necessary for smooth focusing.

This ties in neatly with Dr Hutchinson’s findings of difficulties in focusing, and also means, say the authors, that these factors should be routinely assessed in patients with CFS, who may also benefit from reading glasses at an earlier stage.

(Interestingly, an article in the Washington Post from 2010 suggests that convergence problems may affect one’s ability to watch 3D movies, because the special glasses require healthy convergence.)

Exercises to improve convergence may help some people, but they can be very tiring, and the investigators emphasise that there is not yet any evidence of how effective they might be in ME/CFS.

 

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Inflammation test could be tailor-made for CFS

Simmaron research blog post, by Cort Johnson, 12 February 2017: Inflammation Test Could be Tailor-Made for Chronic Fatigue Syndrome: Are the Mitochondria To Blame?

“More than 90 percent of all noncommunicable diseases of aging are associated with chronic inflammation”  David Furman  – Stanford Institute for Immunity, Transplantation and Infection

Inflammation is a big deal in the medical world.  Even mild inflammation, if it’s consistently present, is known to increase one’s risk of getting cardiovascular diseases, diabetes, Alzheimer’s and many others. Standard tests for inflammation such as C-reactive protein or cholesterol, however, are often unrevealing. For instance, inflammation is a key driver of heart disease, but the first sign for many of heart problems is still a heart attack.

Chronic, low levels of inflammation are found in many serious diseases.  Likewise it’s been said that chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) are inflammatory diseases, but standard tests for inflammation often indicate that none is present. Dr. Montoya believes that current inflammation tests are missing a lot and that future tests will be able to detect the kind of inflammation occurring in ME/CFS.

Given that tests for inflammation are relatively crude, it makes sense that significant efforts would be directed to developing a better test.  It’s no surprise that Mark Davis at Stanford is involved.

Davis’s Institute for Immunity, Transplantation and Infection is spitting out interesting findings like there’s no tomorrow.  Coffee drinkers and dark chocolate lovers were recently pleased to learn that metabolites associated with caffeine and dark chocolate were associated with increased longevity and reduced inflammation. In fact, incubating cells with these metabolites  shut off their inflammatory response.

A 2015 study overturned decades of perceived wisdom that self-attacking or auto-reactive lymphocytes are mostly weeded out early in childhood. (They’re actually very common in adults.)  Davis upended another pillar of orthodoxy when he determined that environment – the microbes, toxins, foods, etc. that we encounter – have far more of an impact on our immune system than our genes. Davis found, for instance, that a single cytomegalovirus infection causes stunningly large and permanent changes to our immune systems.

Davis is bold enough to want to replace all mouse research forever (“Free the mice!”) with a human based approach using immune modeling. In 2015 the Bill Gates foundation gave him $50 million to figure out how to build more effective vaccines. Lastly and most importantly for us, Davis is one of the luminaries sitting on the Open Medicine Foundation’s Scientific Board.  A friend of Ron Davis, I met him at the Davis’ Palo Alto fundraiser a year or so ago. (He said when Ron Davis asks you to do something, you do it).

Davis may have come up with the best test yet for inflammation – an apt subject for ME/CFS and FM patients.  In fact this test sounds like it was made for people with chronic fatigue syndrome and fibromyalgia.

Old Before Their Time?
The study originated in an attempt to quantify the link between inflammation and something perhaps pertinent to chronic fatigue syndrome and fibromyalgia – aging.  While the evidence is sketchy, it does suggest that people with ME/CFS and/or FM might be aging faster.  Decreased brain gray matter, shortened telomere lengths,  gait alterations, and the cognitive and sleep issues, could all reflect a group of patients who are aging a bit before their time.

The Study
Scientists develop inflammation test that may predict cardiovascular disease Cell Syst. 2016 Oct 26;3(4):374-384.e4. doi: 10.1016/j.cels.2016.09.009. Epub 2016 Oct 13. Defective Signaling in the JAK-STAT Pathway Tracks with Chronic Inflammation and Cardiovascular Risk in Aging Humans. Shen-Orr SS1, Furman D2, Kidd BA2, Hadad F3, Lovelace P4, Huang YW4, et. al.

Read more about the study

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