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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Challenge & defence of name SEID and IOM’s definition

Posted on 07/14/2015 by wames

Fink and Schröder challenge the validity of the IoM’s new name and definition of ME/CFS:

Redefining Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

To the Editor: The Institute of Medicine (IOM) proposed a new name (systemic exertion intolerance disease) and diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).’ The IOM
panel aimed to develop evidence based clinical diagnostic criteria  for ME/CFS for use by clinicians, using a consensus-building  methodology.”

We agree that more valid diagnostic criteria for ME/CFS are needed and welcome the panel’s effort to improve patient care through better diagnostic tools. However, we do not believe that a new consensus-driven proposal added to the many existing ones will help reach these important aims. The poor acceptance of ME/CFS in the scientific community is due to a lack of convincing evidence that
ME/CFS is a distinct syndrome that can be delimited from other similar syndromes.

Even though the panel’s comprehensive literature review revealed important data indicating the difficult experiences of patients with ME/CFS, the crucial question regarding the nosological status of ME/CFS remains unsolved2 and can be solved only through new scientific studies, not by consensus.

To identify a distinct syndrome, 2 prerequisites need to be proved. First, studies need to show that symptoms cluster (ie, appear together more often than randomly), which can be done using a cluster or factor analysis.1 None of the reported analyses show that the suggested symptoms cluster (postexertion malaise, unrefreshing sleep, cognitive impairment, and orthostatic intolerance).

Second, boundaries or points of rarity between the syndrome and related syndromes need to be identified, which can be achieved with latent class analysis or similar statistical techniques.3 This type of analysis is not reported. Because the suggested symptoms are common in numerous conditions, identifying these boundaries are of paramount importance.

Patients with ME/CFS have multiple symptoms and many fulfill criteria for multiple syndromes.2 4 The new diagnostic proposal does not answer the important question of whether patients who have multisymptomatic ME/CFS have the same illness as patients with few symptoms.

Is ME/CFS a distinct syndrome or part of a spectrum? To answer that question, we need more research that complies with the basic rules on how to establish and validate diagnoses.

Per Fink, PhD. DMSc
Andreas Schroder, MD, PhD

1. Clayton EW. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: an IOM report on redefining an illness JAMA. 2015:313(11) 1101 1102.
2. Wessely S. Nimnuan C. Sharpe M. Functional somatic syndromes: one or mny? Lancet. 1999:354<9182):936-939.
3. Kendell RF. Clinical validity. PsycholMed 1989;19{1) 45-55.
4. Fink P. Schroder A One single diagnosis, bodily distress syndrome,
succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. /Psychosom Res, 2010;68<5) 415
-126.

Ellen Wright Clayton defend the IOM’s process:

In Reply I concur with Drs Fink and Schroder that more research is  needed to understand the etiology and refine the diagnosis of  systemic exertion intolerance disease. I, however, cannot agree with  their conclusion that the IOM  Committee’s case definition fails because it was not based on a cluster or factor analysis or latent class analysis or by using similar sta¬tistical techniques.

The Committee examined the existing literature that used these techniques1(pp60-66) and found those studies inadequate for several reasons. The committee also recognized that the framing of salient case definitions frequently relies on a variety of inputs, including expert consensus, input from pa¬tients and stakeholders, and evidence-based review of the lit¬erature that addresses etiology, pathophysiology, and discrimi¬nating clinical characteristics.

The Committee cited 2 examples, the Jones criteria for rheumatic fever and the Diagnostic and Statistical Manual of Mental Disorders, in which case definitions had been made in the absence of clear understanding of etiology.1(p38) In its com¬prehensive literature review, which assessed the quality of available evidence, the Committee focused on identifying symptoms that are found in virtually every patient, with an emphasis on those that have objective findings
on testing in cases of ambiguity. The criteria set forth in the report reflect that analysis. As directed by the statement of task, the criteria and the recommendations also reflect the voices of patients, advocates, and experts inside and outside the Committee who were eloquent in their statements about the seriousness, complexity, and chronicity of this disease, and the misunderstanding and dismissiveness of clinicians and others. I stand by the major contribution of the Committee’s work for these patients.

Ellen Wright Clayton. MD, JD

Read more about the IoM and their report.

Read Dr Lucinda Bateman’s answers to questions about the report

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Meanings of ME

Posted on 07/10/2015 by wames

Book abstract:

Chronic fatigue syndrome (CFS or ME) is a problematic diagnosis, and much of the existing writing on the topic is dominated by questions of biology, psychology and causation.

The focus on personal, interpersonal and public meanings in Meanings of ME signals a paradigm shift in thinking about CFS/ME. Contributions from clinicians and academics as well as from those who have personal knowledge of CFS/ME
highlight the varied experiences of the illness.

Rather than insisting on a specific theory of the illness, the authors provide fresh
perspectives on the sometimes conflicting ways in which the diagnosis and symptoms of CFS/ME are interpreted by doctors, patients and others. The book’s early chapters survey four different ways in which CFS/ME can be presented: as lived experience, as a scientific phenomenon, as a medical diagnostic classification, and as a product of culture.

The personal, interpersonal and public meanings of CFS/ME are then discussed before an exploration of stigma and identity from both personal and professional standpoints.

Meanings of ME: Interpersonal and Social Dimensions of Chronic Fatigue, ed by Christopher D. Ward. Palgrave Macmillan, July 15, 2015

Christopher Ward is Emeritus Professor of Rehabilitation Medicine at the University of Nottingham, UK. His clinical interests as a physician were in long-term conditions including chronic fatigue syndrome/ME. Most of his publications have been in the fields of neurology and rehabilitation. He now practices as an accredited Family and Systemic Psychotherapist.

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