Are you concerned about yourself or a friend / family member who has had a fall or is afraid of falling?
Ceredigion’s National Exercise Referral Scheme are now conducting Postural Stability Exercise Classes across Ceredigion.
For some these classes can reduce the chance of falling by up to 54%.
For more information contact your GP
or Paul Jones, Ceredigion Actif 01970 633610 paul.jones@ceredigion.gov.uk
Broadcast 27 June 2017
Available on iplayer until 25 July 2017
Dr Rangan Chatterjee helps 2 people suffering from exhaustion:
Nicola has been diagnosed with ten different conditions, including fibromyalgia, ME, sciatica and depression. Her pain and exhaustion have led her to become reliant on painkillers and she struggles to get through the day. Can Dr Chatterjee help Nicola find the cause of her problems and improve her health so that she can enjoy life again with her three young sons?
La-Vern is suffering from stress and severe exhaustion and is at risk of developing life-threatening type 2 diabetes. As a single mother, she works two jobs as a car saleswoman and a nightclub bouncer whilst juggling the demands of her two young sons. Rangan must find a way to completely overhaul her lifestyle, including her diet, sleeping habits and work-life balance.
Prevalence of and risk factors for severe cognitive and sleep symptoms in ME/CFS and MS, by Jain V, Arunkumar A, Kingdon C, Lacerda E, Nacul L in BMC Neurol. 2017 Jun 20;17(1):117
Background:
There are considerable phenotypic and neuroimmune overlaps between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and multiple sclerosis (MS).
While the precise aetiologies of both MS and ME/CFS are unclear, evidence suggests that deterioration in cognitive function is widely prevalent in patients with either condition.
Little is known about differing risk factors or exposures, which may lead to severe cognitive or sleep symptoms. This study aims to gauge the extent of cognitive and sleep symptoms in ME/CFS and MS patients participating in the UK ME/CFS Biobank and identify the characteristics of those experiencing severe symptoms.
Methods:
This was a cross-sectional study of 395 UK ME/CFS Biobank participants, recruited from primary care and the community, using similar standardised protocols, and matched by age, sex and geographical area. Data were collected from participants using a standardized written questionnaire at clinical visits.
Cognitive symptoms included problems with short-term memory, attention, and executive function. Sleep symptoms included unrefreshing sleep and poor quality or inadequate duration of sleep. All participants reported symptoms based on an ordinal severity scale. Multivariable logistic regression was carried out in the ME/CFS group to investigate socio-demographic factors associated with severe symptoms.
Results:
All cognitive and sleep symptoms were more prevalent in the ME/CFS group, with ‘trouble concentrating’ (98.3%) the most commonly reported symptom. Severe symptoms were also more commonly reported in the ME/CFS group, with 55% reporting ‘severe, unrefreshing sleep’.
Similarly, in the MS group, the most commonly reported severe symptoms were sleep-related. Logistic regression analysis revealed that ME/CFS patients aged over 50 years were more than three times as likely to experience severe symptoms than those younger than 30 (OR 3.23, p = 0.031). Current smoking was associated with severe symptoms, increasing the risk by approximately three times (OR 2.93, p = 0.003) and those with household incomes of more than £15,000 per year were less likely to experience severe symptoms compared to those earning less than this (OR 0.31, p = 0.017).
Conclusions:
Cognitive and sleep symptoms are more common in ME/CFS patients than in MS patients and healthy controls, providing further support for existing evidence of central nervous system abnormalities in ME/CFS. Our findings suggest that people with ME/CFS who are smokers, or have a low income, are more likely to report severe cognitive and sleep symptoms. Future research should aim to develop strategies to prevent the progression of severe cognitive and sleep symptoms through early interventions that prioritise patients identified as being at highest risk.
Research abstract:
HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway by Berit Feiring, Ida Laake, Inger Johanne Bakken, Margrethe Greve-Isdahl, Vegard Bruun Wyller, Siri E. Haberg, Per Magnus, Lill Trogstad in Vaccine [Available online 23 June 2017]
Background:
Vaccination has been suggested to be involved in the aetiology of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). HPV vaccine was introduced in the Norwegian Childhood Immunisation Programme and offered 12 year old girls from 2009. We studied the association between HPV vaccination and risk of CFS/ME and also assessed medical history in relation to both risk of CFS/ME and HPV vaccine uptake.
Methods:
Individual data from national registries, including the Norwegian Population Registry, the Norwegian Patient Registry and the Norwegian Immunisation Registry were linked using the unique personal identification number. Yearly incidence rates of CFS/ME for 2009-2014 were calculated among the 824,133 boys and girls, aged 10-17 living in Norway during these 6 years. A total of 176,453 girls born 1997-2002 were eligible for HPV vaccination and included in further analyses.
Hazard ratios (HRs) of CFS/ME were estimated using Cox regression.
Risk differences (RDs) of vaccine uptake were estimated with binomial regression.
Results:
A similar yearly increase in incidence rate of CFS/ME was observed among girls and boys, IRR=1.15 (95% confidence interval (CI)
1.10-1.19) and 1.15 (95% CI 1.09-1.22), respectively. HPV vaccination was not associated with CFS/ME, HR=0.86 (95% CI 0.69-1.08) for the entire follow-up period and 0.96 (95% CI 0.64-1.43) for the first two years after vaccination. The risk of CFS/ME increased with increasing number of previous hospital contacts, HR=5.23 (95% CI 3.66-7.49) for 7 or more contacts as compared to no contacts. Girls with 7 or more hospital contacts were less likely to be vaccinated than girls with no previous hospital contacts, RD=−5.5% (95% CI −6.7% to −4.2%).
Conclusions:
No indication of increased risk of CFS/ME following HPV vaccination was observed among girls in the first 6 birth cohorts offered HPV vaccine through the national immunisation programme in Norway.
Norwegian Institute of Public Health news blog: No increased risk of chronic fatigue syndrome after HPV vaccination
Daily mail article, 24 June: Controversial HPV vaccine DOESN’T cause chronic fatigue syndrome in teenage girls, major study confirms
Some girls have reported signs of chronic fatigue syndrome after having the jab
However, health officials across the world have always strongly denied the link
And new research on more than 175,000 Norwegian girls shows they are right
Science blog post, By Gretchen Vogel, 27 June 2017: Decision by Europe’s top court alarms vaccine experts
Did the European Union’s highest court just deal a blow to science? “Vaccines can be blamed for illness without scientific proof,”
In a major landmark ruling, the European Court of Justice has determined that a vaccine can be blamed for triggering a disease or causing harm even when there isn’t any scientific evidence to establish a link.
This opens the door to claims from the many thousands of parents who have been blocked from being awarded damages after their child suffered a long-term health problem following vaccination.
The Telegraph online post, by Sarah Knapton, 22 June 2017: European Court of Justice ruling could open floodgates for spurious vaccination claims
The European Court of Justice has been accused of undermining Britain’s vaccination programme after ruling that patients can sue for illnesses they believe were caused by jabs, even when there is no scientific evidence.
The EU’s highest court said that if a number of healthy people developed a disease shortly after receiving a vaccine then that would serve as enough proof to bring a claim.
BBC News England, 27 June 2017: Carers of children with ME ‘accused of fabrication’
Chronic Fatigue Syndrome, or ME, affects about 25,000 children in the UK
A “significant number” of those caring for children with ME have been accused of fabricating their child’s illness, a survey has found.
The charity Action for ME said a safeguarding referral to a child protection team had been made against one in five respondents.
Its chief executive said children and their carers faced the “double whammy” of an ME diagnosis and not being believed about their condition.
NHS England has been asked to comment.
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a debilitating disease that has a major impact on the lives of those affected. It causes persistent fatigue that does not go away with rest or sleep.
It affects about 25,000 children in the UK.
Out of 270 respondents to the survey, one in five said they had had a safeguarding referral to a child protection team made against them.
Half of the referrals involved allegations that parents had fabricated or induced their child’s illness, although 70% of all the cases referred to social services were dropped within a year.
‘Lives stolen’
Sonya Chowdhury, CEO of Action for ME, which is based in Keynsham, near Bristol, said:
“Ninety-six per cent of the parents felt that their children’s care had been affected by a lack of understanding of ME and nearly 100% of parents were concerned their child had not been believed.
“If people are not believing a child about an illness even when there is a diagnosis, those children are facing a double whammy.
“Not only have they had their lives stolen as a result of illness, they’ve had their lives affected and traumatised as a result of the system.”
She said the charity would be carrying out further investigations into the claims.
England’s chief social worker Isabelle Trowler said:
“It’s important that all the professionals who work with young people have a firm understanding of conditions like ME and the impact these can have on their daily lives, so they can access the same opportunities as their peers.
“I have met and continue to meet with groups and organisations including Forward-ME, and will work collaboratively with them and a national network of social workers to further professional understanding of children with ME.”
An investigation of the survey and treatments for ME was on Radio 4’s File on 4 on Tuesday at 20:00 BST. Listen again
Read Dr Charles Shepherd’s comments on the programme in the comments section at our post: ‘Believe ME’ on BBC Radio 4 Tues 27 June 2017 at 8pm
Research abstract:
Guided self-help for patients with Chronic Fatigue Syndrome prior to starting Cognitive Behavioural Therapy: A cohort study, by Sheila Ali, Kimberley Goldsmith, Mary Burgess, Trudie Chalder in Behavioural and Cognitive Psychotherapy 5 May 2017 [Preprint]
Background:
Previous research suggests that minimal interventions such as self-help guidance can improve outcomes in patients with fatigue or chronic fatigue syndrome (CFS).
Aims:
The aim of the current study was to investigate whether self-help guidance could improve physical functioning, social adjustment and fatigue in a group of patients with CFS who were awaiting CBT at a clinic in secondary care.
Method:
Patients completed questionnaires at their initial assessment (baseline), immediately before beginning CBT (pre-treatment), and after their last session of CBT (end of treatment). The primary outcome was physical functioning, and the secondary outcomes were social adjustment and fatigue. Multi-level linear models were used to assess change over time after adjustment for gender and age.
Results:
Multi-level models revealed that from baseline to pre-treatment, patients showed statistically significant improvements in physical functioning, but there were no statistically significant improvements in fatigue or social adjustment. However, all the primary and secondary outcomes showed statistically significant changes after CBT.
Conclusions:
The findings of this study indicate that self-help guidance may be beneficial for patients with CFS who are awaiting CBT treatment or those who are unable to access specialist treatment in their local area.
See a discussion at Phoenix rising which raises questions about the methodology in this study.
NB The full paper is behind a firewall.
The Lancet — one of the most highly regarded journals in the world — is back on the chronic fatigue syndrome (ME/CFS) community’s front page. That’s probably enough to either elicit curses from ME/CFS patients or to produce a strong desire to hide under one’s bed. Lancet’s ME/CFS offerings of late have been dominated by the PACE CBT trials and their controversies. Lancet’s refusal to retract that study is bad enough; it’s unwillingness to allow skeptics to publish a letter stating their concerns (after Lancet asked the PACE authors whether they should) was just plain weird. It’s editor, Richard Horton, can hardly control himself when talking about the ME/CFS community.
Lancet is back with another ME/CFS behavioral study…
Now Lancet is back with guess what? Another behavioral chronic fatigue syndrome trial. To make sure EVERYONE can read it, they put it in their free article section. Lancet has occasionally allowed dissenters to publish letters but there’s no doubt as to the journals pro-behavioral orientation to this disease. What’s more doubtful is whether the studies they’re publishing are helping their case.
Clark, LV, Pesola, F, Thomas, JM, Vergara-Williamson, M, Beynon, M, and White, PD. Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): a pragmatic randomised controlled trial. (published online June 22.) Lancet. 2017
As usual in UK-funded CBT/GET trials the trial was very large (n=211), far larger than non-CBT/GET trials in ME/CFS. in size. That size differential alone gives CBT/GET an advantage because it gives researchers more ability to tease out less subtle effects.
Another advantage — crappy entry criteria. The patients had to meet the NICE guidelines — a slightly more restrictive version of the much derided and now officially debunked (see the AHRQ report) Oxford criteria. Since most of the patients chose walking as their exercise activity of choice we can assume that not many of the really ill were included.
NICE Guidelines:
One wonders when the U.K. and the Netherlands are going to say enough is enough with CBT/GET. How much more, after all, can one say about a therapy’s effectiveness after dozens of studies have been published? They’re certainly not giving up yet.
This study’s twist is that it employed a graded exercise self-help component it’s proponents could be administered cheaply. The participants met with a physiotherapist up to four times to ensure that they were doing the program correctly, but otherwise worked off a GET handbook containing a six-step graded exercise program that took about 12 weeks to complete.
The participants (half were in the GET program and half were in normal care) were assessed at baseline, four weeks after the trial ended, and 12 months after the start of the trial. The Chalder Fatigue scale and Physical Functioning subscale of the SF-36 tests were used to assess results. Another questionnaire asked the patients how much better their health was after the trial.
As in the PACE trial, some changes were made in the study protocol but I’ll leave it to David Tuller, Julie Rehmeyer, Tom Kindlon, Graham and other patient statistical experts to parse out if they might have affected the study.
The Graded Exercise Therapy Program
The Graded Exercise Therapy Booklet (find it here) is humble in many of its promises. It does not promise that ME/CFS patients will be cured or that they will be able to do all the activities they did in the past. It also does not delegitimize problems with exercise or suggest that ME/CFS is all in one’s mind; instead it suggests that prior exercise attempts may have failed because they were too rigorous.
Ignoring the fact that the program has not been tested in more severely ill ME/CFS patients, the booklet states:
A GET programme will help you gradually improve your ability to undertake some of the physical activities that you have been unable to do since becoming unwell.
The short theory section unmasks the limitations of GET and the program. GET, it turns out, is primarily designed to address two factors: deconditioning and the boom/bust cycle.
Deconditioning
Deconditioning is real in ME/CFS but nothing suggests it causes the disease.
It’s clear that deconditioning is present in some ME/CFS patients; in fact, it’s unavoidable. Any disease that so severely limits functioning is going to cause some deconditioning — a physiological state of inactivity which produces a horde of negative effects.(Hold your breath)
Deconditioning results in decreased muscle strength, structural changes to the nerves and muscles, reduced co-ordination and balance, connective tissue thickening and muscle shortening that affects movement (hence the stretching exercises), reduced blood volume, increased inflammation, bone demineralization, stroke volume (heart), thickened blood, orthostatic intolerance, decreased gut motility, constipation, increased risk of diabetes, cognitive problems, sleep disturbances, irritability and depression. (!)
Unfortunately it’s really hard to determine how much bedrest is needed to cause deconditioning or how much activity is needed to stave it off. (One website did say that even by short periods of upright activity can stave off some effects of deconditioning.) It’s clear, though, that deconditioning process can begin within days of being bedbound. Ten days of bed rest in healthy adults resulted in significantly reduced maximum aerobic capacity. Muscle wasting and problems with orthostatic intolerance can occur within days.
Deconditioning is real in ME/CFS but nothing suggests it causes the disease.
Unfortunately for the purveyors of GET and their emphasis on deconditioning, while deconditioning is surely present in some ME/CFS patients, there’s no evidence that deconditioning plays a major role in producing ME/CFS. Systrom’s fascinating invasive CPET study of ME/CFS and other patients with idiopathic or unexplained exercise issues uncovered a heart filling pattern that is opposite to that found in deconditioning. The results of other exercise studies argue against deconditioning being a core element of ME/CFS. Deconditioned people, after all, should improve on a second exercise study; many people with ME/CFS do worse. Even Wyller’s studies (Wyller is a strong proponent of CBT/GET) find no evidence that deconditioning contributes to the core issues in ME/CFS.
If deconditioning is present in some ME/CFS patients, but is not causing ME/CFS, a program like GET should have some positive effects but not many. It should help people around the edges but not significantly affect their core issues. That’s exactly what happened in this study.
The Boom-Bust Cycles
The booklet indirectly acknowledges the major role post-exertional malaise plays in ME/CFS by emphasizing that getting enough rest and avoiding overdoing activities that result in a crash or relapse is critical to the success of the program.
(Note the unusual blend of “treatments” in this program: one is designed to slowly increase activity; another to limit it and ensure that ample rest is present.)
The Six Step GETSET Program
The GETSET program consists of the following steps:
Notes from the booklet: Maintain as much physical activity as you can, even if it is uncomfortable. If you have to take a break, get back to your exercises program as soon as possible. An increase in symptoms does not necessarily mean that harm is being done.
Results
The results of the 200-plus study were decidedly underwhelming. Yes, a higher percentage of patients using the remote form of GET improved than those receiving normal care, but not by much. On a scale of 0-33, with 0 meaning no fatigue is present, the GET patients’ fatigue improved by just 4 points, or about 12%. GET moved the needle on physical functioning — an arguably more important measure — by even less (just 6 points out of a hundred). That outcome was similar to a Cochrane Review which found that GET produced “little or no difference in physical functioning, depression, anxiety and sleep”.
When asked to rate their overall health following the trial, the good news for GET proponents was that a much higher percentage of GET participants reported feeling much better than did those receiving normal care. The bad news was that the percentage of those really benefiting from the program was small, indeed, with just 1 out of 5 reporting feeling “much better” or “very much better”.
With few patients reporting they were much or very much improved by the protocol, the results were underwhelming
More good news for the GET proponents included the low dropout and low serious adverse events rates. The bad news was that only about 40% of the participants (42%) adhered to the protocol “well” or “very well”. That suggested that either some stopped before an adverse event could occur or that the protocol was simply too difficult to manage for many. An easily manageable protocol is a key goal in therapeutic trials; treatments are worth little if they’re too difficult to adhere to.
The elephant in the room was (once again) the missing activity or actometer measurements. Since GET is specifically designed to increase activity levels measuring that increase — easily done with an actometer — having one seems like a no-brainer, yet once again actometers were not included.
In the end the improvement was similar to what one might have expected in a population in which some deconditioning was present. It’s possible that the remote GET program may have improved some patients’ deconditioning (the worse off patients did better) but failed to move the bar in a major way in the disease itself. Physical functioning was barely touched and most in the study (80%) reported that their health was not much or very much better after doing the remote GET protocol.
There’s nothing the matter with — and everything right with — an appropriate exercise program. The problem is the outsize influence CBT/GET studies have had on how ME/CFS is viewed and treated. The GET SET program’s detailed (diary-based) approach to managing activity levels seems encouraging but it was surely optimistic in its projection that activity levels would climb over time. It’s assertion that symptom exacerbation doesn’t reflect harm was questionable as well. (Symptom exacerbation (muscle soreness, fatigue), of course, occurs with any increase in exercise but is brief and the exerciser is left stronger not weaker.) Staci Stevens’ and Dr. Klimas’ heart-rate based activity management programs — specific exercises with rest times — provides a more sophisticated approach for people with ME/CFS. Learn how to do those in the link below.
Learn how to do a heart rate based exercise program in Health Rising’s Exercise Resource Center for Chronic Fatigue Syndrome (ME/CFS)
Check out a report of a patient who significantly increased her activity levels and fitness and even cardiovascular measures using Staci Stevens’ heart-rate approach, which required that she keep her heart rate below a certain level.
The Lancet Effect
Lancet, not surprisingly, filled its comment age with CBT/GET proponents who lauded the study findings — demonstrating again what a low bar for success exists in these studies. Daniel Clauw, M.D. — a fibromyalgia, not an ME/CFS specialist — lead the applause stating, “The finding that graded exercise therapy is effective even when exercise is not being witnessed and directly guided by a physiotherapist is a substantial advance”.
Clauw turned a study which significantly benefited a minority of the participants into a blanket statement that GET was effective for all.
But effective for whom? The study’s own findings indicated that most ME/CFS patients in the trial (66%) were not significantly improved and less than 20% rated their health as much better at the trial’s end. (This is in a study put together using a definition not that dissimilar from the Oxford one, a lax criterion).
The results were decidedly underwhelming and the lead author’s statement, read carefully, reflected that: remote GET, she said, helped “some” patients “manage” their symptoms.
“We found that a self-help approach to a graded exercise programme, guided by a therapist, was safe and also helped to reduce fatigue for some people with chronic fatigue syndrome, suggesting that it might be useful as an initial treatment for patients to help manage symptoms of chronic fatigue syndrome. Dr. Lucy Clark
Symptom management is fine, but effective symptom management should affect more than a minority of participants. Even better, of course, would be a cure. One wonders when the U.K. is going to give up its decades long obsession with CBT/GET and actually try to get at the cause of this disease. Results like these should help U.K. administrators make that switch.
We pretty much know what behavioral therapies can do: they can help with fatigue for a few but do little to improve physical functioning. Neither come close to curing this disease and few, if anyone anymore, are suggesting that they can. The results from both the PACE trial (even in its original version), and this study suggests it’ time for the U.K. and others to get off the behavioral bandwagon and spend some money trying to really help ME/CFS patients.
Medical hypothesis abstract:
Chronic fatigue syndrome and idiopathic intracranial hypertension: Different manifestations of the same disorder of intracranial pressure? by J. Nicholas P. Higgins, John D. Pickard, Andrew M.L. Lever in Medical Hypotheses Vol 105, pp 6-9, August 2017 [Available online 24 June 2017]
Though not discussed in the medical literature or considered in clinical practice, there are similarities between chronic fatigue syndrome and idiopathic intracranial hypertension (IIH) which ought to encourage exploration of a link between them.
The cardinal symptoms of each – fatigue and headache – are common in the other and their multiple other symptoms are frequently seen in both. The single discriminating factor is raised intracranial pressure, evidenced in IIH usually by the sign of papilloedema, regarded as responsible for the visual symptoms which can lead to blindness.
Some patients with IIH, however, do not have papilloedema and these patients may be clinically indistinguishable from patients with chronic fatigue syndrome. Yet IIH is rare, IIH without papilloedema (IIHWOP) seems rarer still, while chronic fatigue syndrome
is common. So are the clinical parallels spurious or is there a way to reconcile these conflicting observations?
We suggest that it is a quirk of clinical measurement that has created this discrepancy. Specifically, that the criteria put in place to define IIH have led to a failure to appreciate the existence, clinical significance or numerical importance of patients with lower level
disturbances of intracranial pressure. We argue that this has led to a grossly implausible distortion of the epidemiology of IIH such that the milder form of the illness (IIHWOP) is seen as less common than the more severe and that this would be resolved by recognising a connection with chronic fatigue syndrome.
We hypothesise, therefore, that IIH, IIHWOP, lesser forms of IIH and an undetermined proportion of chronic fatigue cases are all manifestations of the same disorder of intracranial pressure across a spectrum of disease severity, in which this subset of chronic fatigue syndrome would represent the most common and least severe and IIH the least common and most extreme.
Tracy Duvall blog post, 10 June 2017: ME/CFS: A new explanation – and cure?
In a recent paper, Dr. Willy Eriksen proposes a complete explanation for the development, diversity, and persistence of myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). He also suggests a possible cure. Seeing that this potentially groundbreaking research was attracting little attention, I contacted Dr. Eriksen and interviewed him via email. This post contains a summary of his hypothesis, which I’ve tried to present in everyday language.
Other posts contain:
1) the interview, which contains considerable new information about his hypothesis, and 2) my understanding of how Eriksen’s model fits with other research—and with my experience.
Eriksen holds an MD and PhD and is a research professor at the Norwegian Institute of Public Health.…
Ultra-short summary
…Clumps of immune cells form in one or more key spots along the nervous system. Epstein-Barr virus (EBV) infects the clump(s), and this causes inflammation in the area. This inflammation provokes a reaction in the nervous system, which directly and indirectly accounts for the symptoms of ME/CFS. Extracting a patient’s immune cells, priming them to fight EBV, and returning them to his or her body might cure the disease.
Read the full blog post for more information
Article abstract:
Further commentary on the PACE trial: Biased methods and unreliable outcomes, by Keith J Geraghty in Journal of Health Psychology [First Published June 14, 2017, Editorial]
Geraghty in the year 2016, outlines a range of controversies surrounding publication of results from the PACE trial and discusses a freedom of information case brought by a patient refused access to data from the trial.
The PACE authors offer a response, writing ‘Dr Geraghty’s views are based on misunderstandings and misrepresentations of the PACE trial’. This article draws on expert commentaries to further detail the critical methodological failures and biases identified in the PACE trial, which undermine the reliability and credibility of the major findings to emerge from this trial.
