Gluten sensitivity isn’t a fad

Gluten sensitivity isn’t a fad—it’s a real problem, say scientists, Tuesday, July 07, 2015 from What doctors don’t tell you

Not eating wheat is all the rage, and some sceptics regard it as a fashionable fad—but scientists have discovered that gluten sensitivity is a very real problem, and they’ve also figured out the biological mechanism behind it.

Eating wheat products such as bread or pasta releases molecules that can pass through the gut lining. The molecules include exorphins, which have been found in the spinal fluid of people with schizophrenia and autism.  They could also have an opioid-drug effect, which would explain the light-headedness that seems to affect some sufferers.

Researchers from Milan University have discovered that eating gluten releases these proteins and molecules, but say that more research is needed to find out what biological effect they may be having.

Although the mechanism around celiac disease and gluten intolerance is known, that of gluten sensitivity has not, until now, been established—partly because doctors and scientists just haven’t believed the problem exists.

The researchers made the discovery after they observed the biological processes that occurred after eating two kinds of sliced bread and four types of spaghetti.

Release of wheat gluten exorphins A5 and C5 during in vitro gastrointestinal digestion of bread and pasta and their absorption through an in vitro model of intestinal epithelium, by Milda Stuknytėa et al in Food Research International, June 2015; 72: 208)

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Noncoeliac gluten sensitivity

Research abstract:

The past 5 years have seen an increase in the use of a gluten-free diet outside a diagnosis of coeliac disease or IgE-mediated wheat allergy. This trend has led to the identification of a new clinical entity termed noncoeliac gluten sensitivity (NCGS).

In this Review, we discuss the evidence for NCGS as demonstrated by the results of double-blind, placebo-controlled dietary rechallenge studies. Furthermore, the characteristic phenotype of individuals with NCGS is described as well as the symptom manifestations commonly reported after gluten exposure, which include intestinal symptoms consistent with IBS, and extraintestinal symptoms such as neurological dysfunction, psychological disturbances, fibromyalgia and skin rash.

Moreover, emerging evidence suggests that NCGS can be associated with organic gastrointestinal pathologies, such as IBD, in which its presence might be a reflection of severe or stricturing disease.

However, NCGS is not without its controversies and uncertainties, in particular pertaining to whether it is gluten or nongluten components of the grain evoking symptoms; evidence suggests that fermentable carbohydrates, amylase trypsin inhibitors and wheat-germ agglutinin can also be responsible culprits. Finally, we discuss the novel techniques that might help diagnose NCGS in the future.

The spectrum of noncoeliac gluten sensitivity, by I Aziz, M Hadjivassiliou, DS Sanders in Nat Rev Gastroenterol Hepatol. 2015  Jun 30 [Epub ahead of print]

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ME/CFS: ethical and unethical uses of NLP

In this article by Nancy Blake, she argues that it is unethical and harmful to use Neuro Linguistic Programming (NLP) to persuade a person with ME to deny the biomedical realities of ME/CFS, to tell them that all will be well if they just deny their illness, give up the habits of rest and energy conservation they have learned to use, and any aids they may also rely on.

Instead she believes that NLP can be used to encourage a patient to change the way they think about exercise, how to fight the illness and how to rest, in order to promote better health.

ME/CFS: Ethical and Unethical Uses of NLP, by Nancy Blake on Positive Health online

[Image: Nancy Blake]

 

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ME/CFS & FM as functionally impairing as major diseases

Cort Johnson writes about research into Functionally Somatic Syndromes on June 1, 2015 in his blog Health Rising:

The study urges the need for more research on FSS, a relatively neglected research area. Especially studies on a better understanding of the etiology and treatment of these disorders are needed.

The term functionally somatic syndrome does not have a great history. A 1999 Annals of Internal Medicine article stated that one of the factors perpetuating FSS’s like ME/CFS, GWS and FM is “the belief that one has a serious disease”.  Times have changed, though. The 2015 study cited below is a “functional somatic syndrome” study that aimed to prove that FSSs are, in fact, serious disorders.

Compared to the “well-defined medical diseases” the FS’s are mysteries in the medical world.

It simply describes FSSs such as chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome as being disorders without “sufficient explanatory pathology”. That, of course, suggests that every FSS is simply a disorder whose underlying pathophysiology is currently unknown. In other words the FSS label is simply a temporary holding pen for difficult to understand (and as we’ll see, often underfunded) diseases.

That inability to define a clear, core pathophysiology has left the door open, though, for “FSSs” to be taken less seriously. Studies suggest, though, that the health care needs and work-related absences associated with them result in high economic losses ($7-10,000/year). Early retirement is not uncommon.  Some studies suggest quality of life and functionality might actually be lower in them than in other chronic illnesses.

This study asked if the lowly FSSs might be as functionally impairing as the some of the big diseases in the well-defined medical disease (MD) category.

The Study:

Functional limitations in functional somatic syndromes and well-defined medical diseases. Results from the general population cohort LifeLines, by Monica L. Joustra a , Karin A.M. Janssens a, Ute Bültmann b , Judith G.M. Rosmalen. Journal of Psychosomatic Research May 16 (2015)

This Dutch study took advantage of a large ongoing cohort study. The study consisted of sending  questionnaires to the 90,000 people in the study, (mostly healthy controls) asking about their medical history, functionality and work experiences

They used the 36 question Rand 36 form to assess quality of life (QOL) and provide a physical and mental component summary.  The physical health component (PHC) combine physical function (10 items),  limitations due to physical problems (4 items), bodily pain (2 items)  and general health (5 items) scores. The mental health component (MHC) combined vitality (4 items), social functioning (2 items), limitations due to emotional problems (3 items) and emotional well-being (5 items) scores. A work participation questionnaire assessed their ability to work.

The study then compared the responses of the healthy controls with people with one or more of three FSS disorders (irritable bowel syndrome, fibromyalgia syndrome, chronic fatigue syndrome) and people who had one of four MD’s (Crohn’s disease and ulcerative colitis, multiple sclerosis and rheumatoid arthritis).

Let’s see how the underfunded, mostly ignored, FSS’s did compared to some of the big boys in the medical world.

Results:
This population-based study revealed that the functional limitations in FSS patients are common and as severe as those in patients with MD, despite the absence of underlying organic pathology. Authors

All told people with FSS’s had significantly lower total quality of life scores than people with well-defined medical disorders (MD’s).  When looked at more closely, the physical components (physical functioning, limitations due to physical health, pain) were not significantly different in the two types of disorders.  People with FSS’s tended to have lower mental health component (MHC) scores; that is, they had significantly lower scores in the  vitality, ability to function socially, reductions in functioning due to emotional issues and emotional well-being scores than did the people with MD’s.

Unfortunately, the study did not break down which of these issues were most prominent, but the authors suggested that increased difficulty dealing with symptoms, stigmatization and lack of treatment options were probably important factors driving the lower MHC scores in the “functional somatic syndrome” group.  (I’ll bet cognitive issues are probably more important in the FSS group as well.)

Similar rates of work participation and early retirement between the FSS’s and MD’s cemented how significant an impact FSS’s can have on work lives.

Conclusion:
Functional limitations in FSS patients are common, and as severe as those in patients with MD when looking at QoL and work participation, emphasizing that FSS are serious health conditions. The Authors

All told, the study suggested that having an FSS such as ME/CFS, FM and IBS, is as, if not more impactful, from a functional standpoint, as having a “well-defined medical condition” such as rheumatoid arthritis, multiple sclerosis and inflammatory bowel disease.

ME/CFS and Fibromyalgia As Functionally Impairing As Major Diseases in Medical World By Cort Johnson on June 1, 2015

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Parent carers’ experiences with severe ME

Research abstract:

Experiences of parents who care for sons or daughters with severe myalgic encephalomyelitis are rarely discussed within the literature.

Narratives of parent-carers in Lost Voices from a Hidden Illness were analyzed using interpretative phenomenological analysis. This study aimed to give voices to those who care for individuals with myalgic encephalomyelitis and are often stigmatized and inform future research supporting parent-carers.

Results included themes of identity change, guilt, feeling like outsiders, uncertainty, changing perceptions of time, coping mechanisms, and improvement/symptom management. Findings could inform the development of carer-focused interventions and provide vital information to health professionals about parent-carers’ lived experience.

Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences, by Martina Mihelicova, Zachary Siegel, Meredyth Evans, Abigail Brown, Leonard Jason in Journal of Health Psychology June 10, 2015, Preprint

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Harpist Claire Jones, ME and Scarborough Fair

Welsh harpist Claire Jones talks about her journey with ME and the role of the song Scarborough fair in her recovery, in BBC Radio 4’s series Soul music: Scarborough fair broadcast Sat, 20 June 2015. It is available to listen to online or download. Claire’s story begins at 19 minutes.

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Former Llanelli serviceman inspired by ME sufferer mum

Former Llanelli serviceman to take on 11 physical challenges inspired by ME sufferer mum, in Llanelli Star, June 10, 2015

A former serviceman from Llanelli is pushing his body to the limit — taking on 11 gruelling gruelling physical challenges in a year to highlight a debilitating condition that changed his mum’s life.

Drew Roberts, who served as Senior Aircraftman Technician with the RAF for 12 years, will be breaking the pain barrier to spread the word about Myalgic Encephalopathy (ME).

The 33-year-old is completing some of the toughest extreme obstacle races in the UK, running between three and 21 miles and braving mud, rivers and swamps, walls and straw bales on the way.

He hopes to raise £500 for the ME Association, a national charity that supported his mum, Toni, after she was diagnosed with the condition in 1995.

“I’m exhausted when I finish a race, but after a few days I’ll be back in the gym training and my aches and pain will disappear,” said the former Bryngwyn School pupil, who lived in Bryn until he was 19 before moving away.
“For mum, that tiredness never goes.

“Her condition changes day to day. Maybe she’ll be fine one day and will be able to do a little shopping — but the next, she’ll fall over for no reason other than her legs don’t work or she will have to go back to bed because she is so tired she is unable to string a sentence.

“And because of her illness, she is now registered disabled.”

ME, also known as Chronic Fatigue Syndrome, causes persistent fatigue which affects everyday life and doesn’t go away with sleep or rest.

In May, he completed the Rat Race Dirty Weekend in Lincolnshire, a race organisers bill as the ‘largest assault course on earth’ which consists of 200 obstacles over 20 miles, finishing 93rd out of more than 4,400 competitors.

Drew added: “The races are tough. In the Rat Race, someone dislocated their shoulder and there is the risk of hypothermia because the water we go through is so cold. But I enjoy taking part — it’s quite addictive!
“I’ve done fundraising before, mainly for Help for Heroes and the British Legion, but I thought I’d like to do something for mum this time. I know the ME Association helped her through a difficult time.”

Toni, of the town centre, said she was very proud of her son’s efforts for a charity that has touched their lives.

“There is so much more research needed in order to diagnose, treat and ultimately cure this horrible illness,” she said.

“ME has changed my life beyond all recognition. I am not the person I used to be — and I still miss her.
“The ME Association is a lifeline, particularly in those early days and hey helped me to realise that I wasn’t alone.”

Before the end of 2015, Drew, who left the RAF in 2012 and is now a Composite Fitter at AgustaWestland, has other obstacle races planned for Edinburgh, Nottingham, Manchester and even a night run in London — and hasn’t ruled out adding more to his challenges.

“I’d really like to do the London Marathon, but we’ll have to see!” he says.

Chairman of the ME Association, Neil Riley, said: “We cannot thank Drew enough for his dedication and commitment to raising funds for The ME Association.

“One of the cruellest aspects of ME is the way it wears down its sufferers. Just getting out of bed in the morning can be their equivalent of one of Drew’s marathon efforts.”

Before the end of 2015, Drew, who left the RAF in 2012 and is now a Composite Fitter at AgustaWestland, has other obstacle races planned for Edinburgh, Nottingham, Manchester and even a night run in London — and hasn’t ruled out adding more to his challenges.

“I’d really like to do the London Marathon, but we’ll have to see!” he says.

Chairman of the ME Association, Neil Riley, said: “We cannot thank Drew enough for his dedication and commitment to raising funds for The ME Association.

“One of the cruellest aspects of ME is the way it wears down its sufferers. Just getting out of bed in the morning can be their equivalent of one of Drew’s marathon efforts.”

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Gwyn Hopkins walks over 1,000 miles for ME research

First published Tuesday 16 June 2015  in Tivyside advertiser by Enfys Bosworth:

Gwyn Hopkins is about to pass the one thousand mile mark on her walk to raise money and awareness for ME research.

She set off from Cardigan Castle on her 64th birthday to walk for around 12 days, covering 150 miles which would bring her total walking distance for this charity to well over one thousand miles.

She has had ME but made a complete recovery by the end of 2003 which she attributes to complementary therapies, detoxifying her lifestyle and family support.

“When I was very ill I was confined to a wheelchair, the highlight of my day would be making a cup of tea and after doing that I may not have been strong to do it again for a few weeks,” Gwyn explained

“I was told I would only make 60-70% recovery but look at me now fully able.”

Her walk will take her towards Lampeter, she will then travel up to Lake Bala and across to Llangollen.

As well as walking over 150 miles she will be carrying a 14kg bag which is over a quarter of her own body weight with all the equipment she needs.

She added: “Some days I’ll do well over 20 miles a day, others maybe 10 – all depends on the terrain and who I meet along the way.”

Gwyn explained that she used to work on a help line for ME and still likes talking to people who approach because often ME is not understand by people unless they have actually had it.

She hopes to raise £1,000 for the charity ME Research UK which funds biomedical research into Myalgic Encephalomyelitis (also known as ME/CFS) and related illnesses.

To find out more or to donate visit Just Giving or text GHME88 then the amount (£1, 2, 3, 4, 5, or £10) to 70070.

For more information about Gwyn’s recovery from ME visit her website .

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Variability in symptoms complicates usefulness of case definitions

Research abstract:

Background:
Ambiguities in case definitions have created difficulties in replicating findings and estimating the prevalence rates for chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME).

Purpose:
The current study examined differences in occurrence rates for CFS and ME cardinal symptoms (i.e. post-exertional malaise, unrefreshing sleep, and neurocognitive deficits).

Results:
Findings indicated that there is a wide range of occurrence rates on critical symptoms of the case definition, suggesting that either the types of patients recruited differ in various settings or the questions assessing core symptoms vary in their wording or criteria among different researchers.

Conclusions:
The polythetic nature of the case definition may contribute to the wide ranges of symptom occurrence that was found. In order to increase assessed reliability of the symptoms and case definitions, there is a need to better standardize data collection methods and operationalization of symptoms. This solution would reduce the heterogeneity often seen in populations of CFS patients.

Variability in symptoms complicates utility of case definitions, by Stephanie L. McManimen, Leonard A. Jason & Yolonda J. Williams in Fatigue [Published online: 12 May 2015]

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ME/CFS – a multisystem disorder

Research abstract:

Background
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic illness that is often disabling. This paper introduces the Chronic Fatigue Initiative, which conducted a large multi-center study to more fully characterize ME/CFS and ultimately to describe and understand the underlying mechanisms and pathogenesis of this illness.

Methods:
A total of 203 patients with ME/CFS (cases) and 202 matched healthy controls (HCs) were enrolled from 5 geographically different expert clinical sites to create a well-characterized population linked to a national biorepository. ME/CFS subjects were compared to a one-to-one matched HC population for analyses of symptoms and illness severity. Cases were further evaluated for frequency and severity of symptoms and symptom clusters, and the effects of illness duration and acute vs. gradual onset.

Results:
This study collected more than 4000 pieces of data from each subject in the study. Marked impairment was demonstrated for cases vs. controls. Symptoms of fatigue were identified, but also, nearly as frequent and severe, were symptoms of cognitive dysfunction, inflammation, pain and autonomic dysfunction. Potential subgrouping strategies were suggested by these identified symptom clusters: sleep, neurocognitive, autonomic, inflammatory, neuroinflammatory, gastrointestinal and endocrine symptoms.

Conclusions
Clearly, ME/CFS is not simply a state of chronic fatigue. These data indicate that fatigue severity is matched by cognitive, autonomic, pain, inflammatory and neuroinflammatory symptoms as the predominant clinical features. These findings may assist in the clarification and validation of case definitions. In addition, the data can aid clinicians in recognizing and understanding the overall illness presentation. Framing ME/CFS as a multisystem disorder may assist in developing therapies targeting the multifaceted domains of illness.

Findings from a clinical and laboratory database developed for discovery of pathogenic mechanisms in myalgic encephalomyelitis/ chronic fatigue syndrome, by N.G. Klimas, G. Ironson, A. Carter, E. Balbin, L. Bateman, D. Felsenstein, S. Levine, D. Peterson, K. Chiu, A. Allen, K. Cunningham, C.G. Gottschalk, M. Fletcher, M. Hornig, C. Canning, A.L. Komaroff in Fatigue Vol.3, #2, pp 75-96
Published online: 24 Apr 2015

More info: Chronic fatigue initiative at Hutchins Family Foundation

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