Poor quality of life in young people with ME/CFS

Posted on 09/16/2015 by wames

An ME Research UK article comments on the recent research in Norway into adolescents with CFS:

For such a devastating illness, there is surprisingly little information in the scientific literature about patients’ experiences of living with ME/CFS day-to-day. The few investigations that have been conducted have concentrated on adults, and they show that both physical and mental activity can be severely affected. But what about young people?

There have been few formal studies on them to date, even though a report to the Chief Medical Officer in 2002 (read more) stated that ME/CFS “potentially threatens physical, emotional, and intellectual development of children and young people, and can disrupt education and social and family life, at a particularly vulnerable time of life”.

In Norway, the NorCAPITAL project (Norwegian Study of Chronic Fatigue Syndrome in Adolescents: Pathophysiology and Intervention Trial) ran for some years (see project details) with the main aim of exploring the underlying causes of ME/CFS in adolescents.

The study participants were obtained from all 20 paediatric departments in Norwegian hospitals, as well as from primary care paediatricians and general practitioners who had been invited to refer their patients (aged 12–18 years) to a central Norwegian department of paediatrics. Several scientific reports have already been published from the project data, and the latest, from the Institute of Nursing in Oslo, describes health-related quality of life in 120 adolescents with ME/CFS (72% girls) and 39 healthy controls (read the scientific report).

It found that the average length of illness was 21.4 months (only two young people had been ill for less than 6 months), and that the young patients had missed school 65% of the time in the previous month (compared with 2.1% of the time in healthy children). Health-related quality of life was dramatically worse in youngsters with ME/CFS compared with healthy children: on a scale 0–100, they scored a full 44 points lower overall. As regards the specific elements making up quality of life, the ME/CFS patients scored 60 points lower for physical functioning, 52 points lower for school functioning, 28 points lower for emotional functioning, and 27 points lower for social functioning.

Given their chronic illness, it was not surprising that the young ME/CFS patients had a much higher risk of depression-associated symptoms than their healthy peers. However, statistical modelling of the data revealed that the lower quality of life was associated with having ME/CFS rather than with being depressed per se. As the authors say, “Experiencing difficult thoughts and sad feelings (depressive symptoms) might not be surprising, considering the consequences of the disease, such as reduced school attendance and time with peers.”

These Norwegian researchers had previously investigated health-related quality of life in Norwegian children and adolescents who were in remission after acute lymphoblastic leukemia, or who had undergone renal transplantation. They point out that quality of life was more impaired in adolescents with ME/CFS than in the patients with these two other conditions, and they refer to an ME Research UK-funded study from the University of Dundee (read more) which found quality of life in youngsters with type 1 diabetes to be lower than in equivalent groups with diabetes and asthma (see chart below). The Dundee researchers had also found biomedical anomalies in children – increased oxidative stress and increased white blood cell apoptosis – similar to those seen in adults with ME/CFS (read more).

Children HRQOL figure FINAL

 

An important aspect of a dramatically reduced quality of life is the social isolation it brings, as the NorCAPITAL researchers found when they explored adolescents’ own experiences of living with ME/CFS. The lack of participation at school and social gatherings with other teenagers made them feel like outsiders; as the researchers say, the young people “experienced loss of a normal life and the changes in friendships difficult, leading to loneliness and isolation.”

This report is an important contribution to the literature, highlighting the severe impairment that ME/CFS causes to the physical, emotional and social quality of life of young people. This impairment can even be greater that in other chronic diseases, such as acute lymphoblastic leukemia, type 1 diabetes and asthma. And cruelly, it happens at a particularly vulnerable time of life when disruption to education and family has the severest consequences, and when social interaction with peers is most important.

Further reading
Health related quality of life in adolescents with chronic fatigue syndrome: a cross-sectional study. Winger A, et al. Health Qual Life Outcomes, 2015 Jul 3; 13: 96 (read more).
Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood. Kennedy G, et al. Pediatrics, 2010; 125(6). An ME Research UK-funded study (read more)

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Teenage kickboxer with CFS

Posted on 08/11/2015 by wames

Caerphilly teen kickboxer to defend world crown, by Caio Iwan in South Wales Argus online, Wednesday 5 August 2015

A TEENAGE kickboxer from Pontllanfraith is set to travel to Germany to defend her world crown – despite nearly having her legs amputated as a child.

At the age of three, Amber Murphy contracted meningococcal septicaemia and was on life support for three days.

Doctors warned they might have had to amputate both her legs, but little Amber fought back and made a full recovery.

“Since that day she has lived every day to the full, she wants to do everything, go everywhere and do well in all she does,” her mother Suzanne Roberts said.

Now aged 16, Amber is the kickboxing world champion in the 13 to 16 category and travels to Germany in October for the World Championships to defend her title.

She took up kickboxing at the age of five and has more than 130 medals and trophies to her credit from various competitions.

Amber – who trains with Devils Martial Arts in Oakdale – has been abroad with the Welsh Squad on several occasions, including visits to Holland, Rome, Cyprus, Paris and Germany.

She has gone on to achieve a black belt and various prestigious titles including European Gold, ICO Welsh Open Champion, Lordswood Open Champion, ICO Battle of Wales Champion, and the world title which she won in Paris in November 2012.

But despite overcoming meningitis as a child, Amber now faces a daily fight after being diagnosed with Chronic Fatigue Syndrome two years ago.

Ms Roberts added: “[It] means that she always feels extremely tired no matter how much sleep she has along with a whole host of other symptoms.

“She was told by physiotherapists that if she could not get her symptoms under control then she would have to give up kickboxing to which she replied ‘over my dead body’! She tries very hard for the CFS not to rule her life and trains and competes as normal.”

Amber, who is already being sponsored by Blackwood Rotary Club this year, is looking for donations or sponsors to help her travel.

If you can help, contact Suzanne Roberts on 07912 893 498 or at sueroberts69@hotmail.co.uk

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Severe ME day Saturday 8 August 2015

Posted on 08/07/2015 by wames

WAMES invites you to join with them and the 25% ME Group to raise awareness of the home care needs of people with severe ME. Many severely affected people in Wales struggle to help professionals understand the extent of their need for nursing and social care in the home. Share our Facebook and twitter posts with others or download the photos (right click on photo and select save photo as):

Not sick enough forNot sick enough for

 

 

 

 

 

 

Trapped by ME hands Trapped by ME hands Trapped by ME face

Trapped by ME face   We don't expect...

 

 

We don’t expect to be disbelieved

 

 

Home care is the theme for Severe ME Day on August 8th, by Helen Brownlie in Phoenix Rising, 6 Aug 2015

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NHS Wales ME services development plan

Posted on 08/04/2015 by wames

The ME-CFS & FM Implementation Group, chaired by Prof Jonathan Richards (Cwm Taf Locality Clinical Director), has met twice during the first half of 2015.

This Group gives Health Boards (HBs) a chance to share experiences and encourage each other in implementing the recommendations of the Government’s Task & Finish Group Report. Patients are represented by Jan Russell for ME and Carol Ross for FM.

2015 goals for each Health Board:

  • appoint an executive lead to oversee service development & be an advocate at Board level
  • appoint a clinical lead/s to implement Report recommendations
  • identify HB healthcare ‘speciality’ with responsibility
  • develop a 3 year action plan
  • begin to hold stakeholder group meetings

Each Health Board has now named at least one person to represent them at the meeting. Some HBs’ plans are well under way and others will be working hard to develop theirs before the next meeting in November.

It is not the job of the Implementation Group to make decisions about illness names, diagnostic criteria, causes and treatments of ME and FM, etc. It doesn’t discuss medical issues but strategy and planning issues.

The Government’s Task & Finish Report recommendations

“focus on strengthening implementation arrangements and improving patient voice in the system. In making its recommendations, the Task and Finish Group has sought to identify the infrastructure required to support system change.”

Task & Finish Group Report

More information in the next issue of me voice, due out mid August 2015.

 

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POTS

Posted on 08/01/2015 by wames

Research abstract:

Postural tachycardia syndrome (POTS) is a form of chronic orthostatic intolerance for which the hallmark physiological trait is an excessive increase in heart rate with assumption of upright posture.

The orthostatic tachycardia occurs in the absence of orthostatic hypotension and is associated with a >6-month history of symptoms that are relieved by recumbence. The heart rate abnormality and orthostatic symptoms should not be caused by medications that impair autonomic regulation or by debilitating disorders that can cause tachycardia.

POTS is a “final common pathway” for a number of overlapping pathophysiologies, including an autonomic neuropathy in the lower body, hypovolemia, elevated sympathetic tone, mast cell activation, deconditioning, and autoantibodies.

Not only may patients be affected by more than one of these pathophysiologies but also the phenotype of POTS has similarities to a number of other disorders, e.g., chronic fatigue syndrome, Ehlers-Danlos syndrome, vasovagal syncope, and inappropriate sinus tachycardia. POTS can be treated with a combination of non-pharmacological approaches, a structured exercise training program, and often some pharmacological support.

Postural Tachycardia Syndrome: Beyond Orthostatic Intolerance, by EM Garland, JE Cerledonio, SR Raj in Curr Neurol Neurosci Rep. 2015 Sep;15(9):583

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First Class student overcomes CFS to graduate in Bangor

Posted on 07/29/2015 by wames

Article from Bangor University website:

A Psychology student who credits Bangor University for ‘taking a chance’ on her has graduated with a First Class Honours degree.

Ashleigh Johnstone

Ashleigh Johnstone from Douglas on the Isle of Man has battled Chronic Fatigue Syndrome since high school and her health issues meant that she struggled with her GCSE and A Level exams. But despite setbacks, Ashleigh aspired to study at university.

Ashleigh said, “I have always loved education and looked to the next step  – in high school I was very excited to move to university.

“However, my plans hit a bit of a snag when I was diagnosed with Chronic Fatigue Syndrome. This severely impacted on my education, as there were many days where I could barely get out of bed. Luckily, my school – St Ninian’s High School – was supportive and they helped facilitate a plan for me to be able to complete my English and Maths GCSEs through online learning.

“At A Level they again allowed me to do what I was able to at the time. My health had started to improve and I was able to start considering university, which is something I was worried I would have to miss out on.

“My mum took me along to the Higher Education Fair on the Isle of Man and I spoke to a representative from Bangor University who explained that they would still consider my application, despite only having two A Levels  – and now here I am graduating!”

Once Ashleigh began studying her degree in Psychology with Neuropsychology, she wasted no time in getting involved in activities within the School of Psychology, serving as a Course Representative, Mentor, Open Day Guide and Email buddy. She also travelled to Krakow and Auschwitz in Poland on a field trip in her second year.

Ashleigh explained, “I have genuinely loved my three years at Bangor and have tried to make the most of my time here. At some points throughout my degree I struggled with my health – with Chronic Fatigue Syndrome you can have periods where you feel great, and then you can start to relapse again.

“After a few months at university I really started to struggle and considered dropping out because of my health. However, the Disability Services and my tutors were wonderful and have always been very understanding.

“It’s very exciting to be graduating. There were a few occasions where I didn’t think I would make it to graduation, however the staff in the School of Psychology were all so supportive that I kept pushing through.

“It is also slightly bittersweet; I’m going to miss all of my friends who are leaving Bangor, but I’ve got a Masters and PhD waiting for me in September so I’m looking forward to starting that.”

During the summer between second and third year Ashleigh took part in a summer research internship in the psychology department, which she believes helped pave the way for her to pursue a postgraduate degree.

“I learnt so much about psychological research during those two months, and I believe the experience really helped with my postgraduate applications,” said Ashleigh.

“I have been offered a fully funded Masters and PhD at Bangor that I’ll be starting in September. It’s a really exciting project, and it means I get to stay at the university!

“I’m so grateful for all the opportunities Bangor has given me, and I’m looking forward to the next four years!”

First Class student overcomes health problems to graduate, Bangor University website, 13 July 2015 [includes video of Ashleigh]

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Muscle weakness in arms & trunk in ME/CFS

Posted on 07/24/2015 by wames

ME Research UK comments on research into muscle weakness, July 21 2015:

One of the key difficulties that ME/CFS patients face is standing (orthostasis), particularly standing still. For them, simply being upright can trigger a cluster of symptoms, such as dizziness, altered vision, nausea, fatigue, headache or sweating. This ‘orthostatic intolerance’ can have many causes (see our article, “Standing up for ME”), but a lack of endurance in the muscles of the trunk, which maintain the upright position, could be a contributing factor, as a new study shows.

For the investigation, researchers at Antwerp University Hospital recruited 72 women with ME/CFS, 30 women with osteoporosis (who also have standing problems) and 55 healthy women. All underwent a timed-loaded standing test which measures how long a person­­­­­­ can hold a 1 kg dumbbell in each hand in front of her with straight arms.

This test assesses combined trunk and arm endurance, and is intended to simulate the performance of the torso during everyday activities. As expected, timed-loaded standing was significantly shorter in patients with osteoporosis (84.5 seconds on average) than in the healthy women (165 seconds).

In women with ME/CFS, however, timed-loaded standing was significantly lower (50 seconds) than in either of these groups. The authors note that problems with standing upright and physical activity are similar in ME/CFS and osteoporosis patients – both groups have problems keeping their spines vertical (read the report). This, and the specific biomechanical weakness identified in the women with ME/CFS, certainly needs further investigation.

This research group in Belgium had previously examined upper limb muscle recovery – a feature that had never been subjected to research in ME/CFS patients, despite the fact that these muscles are most frequently used for everyday activities, such as combing and washing hair, ironing and cooking (report).

After an exercise challenge consisting of 18 maximal contractions and a recovery phase of 45 minutes, muscle recovery was significantly slower in ME/CFS patients than healthy people (muscle strength was still recovering 30-45 minutes after the exercise).

Intriguingly, this was only true for patients who also fulfilled the 2010 criteria for fibromyalgia, i.e. who had a high degree of “widespread pain” as well as the symptoms shared with ME/CFS. As many ME/CFS patients fall into this category (see our funded study ‘Pain characteristics’), the test could be a simple way of objectively measuring muscle impairment in a substantial number of people. The fact that muscle recovery of the upper limb muscles was NOT delayed in an equivalent experiment in multiple sclerosis patients makes the findings even more intriguing (read more).

Both investigations show that relatively simple, easy-to-perform measurements – such as the endurance of the muscles in the trunk and arms, or the change in upper arm strength over a short period – can yield potentially important clinical information about biomechanical weakness in ME/CFS. Historically, muscle fatigability and weakness, often in response to minor degrees of exercise, was a characteristic feature of ME (read more), and muscle cramps, fasciculations (twitching) and extreme muscle tenderness were also common findings (read more). These aspects are rarely discussed in the modern literature and are largely ignored by healthcare professionals today. Just how many ME/CFS patients have had a proper clinical examination of their affected muscles? Probably very few, if any – and this needs to change.

Sources

Timed loaded standing in female chronic fatigue syndrome compared with other populations. Eyskens JB, et al. JRRD, 2015; 52 (1).21-30. Read more (full text).
Recovery of upper limb muscle function in chronic fatigue syndrome with and without fibromyalgia. Ickmans K, et al. Eur J Clin Invest, 2014 Feb; 44(2): 153–9. Read more (abstract).
The Specificity of the C D C-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups of patients who fulfill the criteria. Kennedy G, et al. Annals of Epidemiology, 2004 Feb; 14(2): 95–100. Read more (essay).
Ramsay AM. Epidemic neuromyasthenia 1955-1978. Postgraduate Medical Journal 1978; 54: 718-721. Read more (full text).

Muscle weakness in arms and trunk in ME/CFS

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Mindfulness and ME/CFS

Posted on 07/24/2015 by wames

Research abstract:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is  associated with physical, cognitive and emotional challenges, and much  research suggests that mindfulness-based interventions (MBIs) can be  helpful for these difficulties. It is reasonable to assume that living with ME/CFS influences how people experience MBIs.

However, existing literature provides little insight into what it is like to attend an MBI if experiencing ME/CFS and thus there is a paucity of information to guide intervention. The current research aimed to elucidate this experience by applying Interpretative Phenomenological Analysis to eight interview transcripts.

Four master themes – ‘The gift of mindfulness’, ‘Struggling with doubts and understanding’, ‘The vulnerable self’, and ‘Healing relationships’ – emerged.

Individuals gave complex reports of MBIs which encompassed both positive and
negative accounts. Throughout these accounts, ME/CFS appeared at the forefront of individuals’ perceptions as if it were a lens they viewed their experiences through. For some, mindfulness gifted acceptance, ways of self-soothing and methods of regaining control. Many participants struggled with mindfulness however, fighting with their
own internal barriers and finding the guidance they were given confusing.

Being at the MBIs seemed to automatically place individuals in a vulnerable position. Participants reported that it was essential for them to ‘be on guard’, to monitor their activity and environment in regards to illness exacerbation. Indeed, many individuals seemed to expect the worst from the MBIs, particularly from the attitudes of their course peers and facilitators.

In contrast to participants’ expectations, individuals commonly reported that their facilitators and peers understood their 15 conditions and experiences. This sense
of being validated and of belonging was reported to be therapeutic. Moreover, relationships with others on the course were found to elicit a sense of hope and helped individuals engage with the mindfulness material.

Best practice recommendations include reducing participants’ anxieties and managing expectations around MBIs as well as harnessing the power of the group. Future research might further explore discourses around MBIs, the group dynamics involved, hope, demographic differences, and the potential utility of Acceptance and Commitment
Therapy for ME/CFS.

A pluralistic approach to medically unexplained symptoms, by Jennifer Ellen Dayes, City University London, September 2014. Online: May 5, 2015

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Dr Leonard Jason’s reflections on SEID

Posted on 07/21/2015 by wames

Article abstract:

The Institute of Medicine (IOM) in the US has recently proposed that the term Systemic Exertion Intolerance Disease (SEID) replace Chronic Fatigue Syndrome (CFS).  In addition, the IOM proposed a new case definition for SEID, which includes substantial reductions or impairments in the ability to engage in pre-illness activities, unrefreshing sleep, post-exertional malaise, and either cognitive impairment or orthostatic intolerance.

Unfortunately, these recommendations for a name change were not vetted with patient and professional audiences, and the new criteria were not evaluated with data sets of patients and controls. A recent poll suggests that the majority of patients reject this new name. In addition, studies have found that prevalence rates will dramatically increase with the new criteria, particularly due to the ambiguity revolving around exclusionary illnesses.

Findings suggest that the new criteria select more patients who have less impairment and fewer symptoms than several other criteria. The implications of these findings are discussed.

Reflections on the IOM’s systemic exertion intolerance disease, by Leonard A.Jason,
Madison Sunnquist, Abigail Brown, Stephanie McManimen, Jacob Furst in Pol Arch Med Wewn. Published online: July 15, 2015

 

 

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Accurate diagnosis of ME and CFS based on objective test methods for characteristic symptoms

Posted on 07/15/2015 by wames

Article abstract:

Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue.

Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion.

In contrast, CFS is primarily defined by (unexplained) chronic fatigue, which should be accompanied by four out of a list of 8 symptoms, e.g., headaches. Due to the subjective nature of several symptoms of ME and CFS, researchers and clinicians have questioned the physiological origin of these symptoms and qualified ME and CFS as functional somatic syndromes.

However, various characteristic symptoms, e.g., post-exertional “malaise” and muscle weakness, can be assessed objectively using well-accepted methods, e.g., cardiopulmonary exercise tests and cognitive tests. The objective measures acquired by these methods should be used to accurately diagnose patients, to evaluate the severity and impact of the illness objectively and to assess the positive and negative effects of proposed therapies impartially.

Accurate diagnosis of myalgic encephalomyelitis and chronic fatigue syndrome based upon objective test methods for characteristic symptoms by Frank NM Twisk in World J Methodol, 2015 Jun 26; 5(2): 68-87.

 

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