Myalgic Encephalomyelitis (ME) in Children and Adolescents Part 1

 

  “Having a child with ME changes you. It makes you fearful that the next relapse will take away even more of their childhood.

You worry that the demons will come in the night and challenge your passion for survival.

You question whether your love will be enough to comfort or ease their pain.

You wonder if you can hold on to the belief that miracles do happen”

Overview

Myalgic Encephalomyelitis (ME) is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features.
Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

ME is a complex chronic disease that affects children & adolescents as well as adults. While many paediatricians and other health-care providers are aware of ME, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis.

While some young people with ME can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or mostly confined to bed. Prevalence estimates for paediatric ME vary from 0.1 to 0.5%.

Because there is no diagnostic test for ME, diagnosis is purely clinical, based on the history and the exclusion of other illnesses by physical examination & medical testing.

Co-existing medical conditions including orthostatic intolerance (OI) are common. 

NB: Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening.

 

More about Myalgic Encephalomyelitis here and about the cardinal feature here

 

Symptoms

Symptoms may progress more slowly in children than in teenagers or adults.

In addition to post-exertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances.

 1. Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea, and severe weakness.

 2. Neurocognitive impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school programme.

 3. Pain may seem erratic and migrate quickly. Joint hypermobility is common.

Notes: Fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults. - ICC 2011

 

Children and adolescents with ME mostly have the same symptoms as adults. Some differences are:

Unlike in adults with ME, children, and adolescents with ME may not usually have muscle and joint pain.

However, headaches and stomach pain may be more common in this age group.

Note: The difficulties with younger children are that they may not be able to describe the pain well.
 

Some children, especially adolescents, with ME have dizziness and light headedness and other symptoms that are triggered when standing up and sometimes also sitting upright. This could be Orthostatic Intolerance.

 

In adolescents with ME, sleep problems may be hard to detect, as sleep cycles change during puberty. The demands of school, homework, after-school activities, and social activities also affect sleep.

Common sleep complaints in children and adolescents with ME include:

·       Difficulty falling or staying asleep

·       Daytime sleepiness

·       Intense and vivid dreaming

 

 

In children, particularly in adolescents, ME is more likely to start after an acute illness, like the flu or mononucleosis.

 

As in adults, symptoms of ME in children and adolescents may appear like many other illnesses, and there is no single diagnostic test to confirm ME, making ME difficult to diagnose.

The illness can be unpredictable. Symptoms may come and go, or there may be changes in how bad they are over time, i.e., there are fluctuating severities in symptoms.

Children and adolescents should be seen by doctors and get support as soon as they become ill. In other words, a child with some or all the symptoms of ME should not have to wait for months to see a doctor. Early diagnosis is essential to prevent a worsening of ME.

 

 

Diagnosis in Children & Adolescents

Diagnostic assessment of possible ME in children is very similar to that in adults. The child’s/adolescent’s doctor may undertake the following:

·       Ask about child’s/adolescent’s and family’s medical history, including a review of any medications and recent illnesses

·       Do a thorough physical examination

·       Order blood, urine, or other tests

·       The doctor may ask many questions and depending on the age of the        child/adolescent, the questions might be asked of the patient, and/or parent/guardian.

 

Questions the doctor may ask might include: 

 

How long has the child/adolescent been ill?

How did the illness start? Was it after an illness/ What was that illness?

What is the child /adolescent able to do now? How does it compare to what the child /adolescent was able to do before?

Does the child feel any improvements after sleeping or resting?

What makes the child/adolescent feel worse? What helps the child/adolescent feel better?

What symptoms keep the child/adolescent from doing what he/she wants to do?

What symptoms prevent the child/adolescent from being able to attend school/out of school activities/carrying out hobbies/socialising? What happens when the child/adolescent tries to do activities that they used to do without problems?

Does the child/adolescent seem to have trouble remembering or focusing on tasks?

 

It would be great if all doctors did ask these important questions. Having the information, i.e., the responses, ready to share with the child's doctor would aid confirmation of a suspected diagnosis along with the diagnostic tools we mention below.

 

 

Importance of Early Diagnosis and Management in Young People

Unlike with adults, children have a much better chance of recovery if treated correctly, most recover within 3 years. However, children who receive an incorrect or delayed diagnosis continue, on the advice of their doctors with sports activities and to attend school full time, resulting in worsening severity and prolonged illness.

Notes about making a referral

Primary Carers/Medics might refer children/adolescents with ME to see a specialist, i.e., a referral to other services may be required for additional assessment - to check for other conditions and to help manage the complexities of their symptoms of ME; for symptom management or further support and advice. This could include referral to a consultant paediatrician, physiotherapist, occupational therapist, endocrinologist, rheumatologist. Unfortunately most won't be familiar with ME and unfortunately most specialists don’t have knowledge of ME; patients or carers/parents find themselves educating medical professionals, some are lucky to have a medic who will listen and support them, others not so lucky.

Currently there is no consultant in Paediatric ME or a Paediatric Consultant in Ireland who is fully knowledgeable about ME. We understand that Dr Nigel Speight, ME expert and paediatrician tends to see patients in Ireland sometimes. 

Essential Resources & Tools for Making a Diagnosis of ME

• Current best international guidelines available about and for Myalgic Encephalomyelitis (ME) are: 

(i) International Consensus Criteria for Adults & Paediatrics  and International Consensus Primer. The Primer (2012) is a guideline written about and for Myalgic Encephalomyelitis (ME) in Adults & Children. Each child (all young people) will have his/her own unique combination of the ME criterial symptoms. The onset of ME in children often occurs around twelve years of age but it has been diagnosed in a child who was two years old ......See paediatric considerations pages 9 & 19 of the International Consensus Primer for Adults and Children 

 

(ii) Frontiers Paediatric ME Primer: Myalgic Encephalomyelitis Diagnosis and Management in Young People: A Primer has advice re schools, education plans etc. It has general Paediatric advice, and the writers are all very experienced ME Paediatricians worldwide. This primer has been written to provide the information necessary to understand, diagnose, and manage the symptoms of ME in children and adolescents Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer

 

• Diagnostic Questionnaires

(i) The DSQ- PED questionnaires from De Paul consists of a parent form and a child form. Parents can fill in a symptom questionnaire to present to the child’s medic. Medics can collect data from both children and their parents to obtain a thorough understanding of the child's ME. Children under the age of 12, or those with reading or comprehension difficulties, complete this questionnaire with the assistance of a parent or guardian. These forms are based on research.

 

DSQ-Ped Parent Report Form here

DSQ-Ped Child Report Form here

(ii) PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)

Post Exertional Neuroimmune Exhaustion malaise (PENE) is a key symptom of Myalgic Encephalomyelitis (ME). PENE is referred to as PEM by others. The PEM questionnaire by De Paul is a questionnaire on the distinctive post exertional response in ME, i.e., PENE as per the ICC, an essential criterion for an ME diagnosis. 

 

By answering the questions, you get an idea of how ‘activity’, anything ythe patient does physically, cognitively, emotionally, affects them and what their individual post exertional response is, i.e., what symptoms occur and increase. 

 

Every person with ME is different. The post exertional response for a lot of people might not occur straight away and tends to be delayed 24 hours or 48 hours after activity. The questionnaire includes key indicators that show within answering a set of questions that it sounds like ME.

This is the link to the De Paul Post Exertional Questionnaire.

 

 

 

 

 

Films about ME in Children & Adolescents

Important Information on Paediatric ME from Dr Nigel Speight

An overview of Paediatric ME across a few videos from an expert in the UK, Dr Nigel Speight, Paediatric Consultant, who talks about ME in children, what can be done to help them & their families & the issues around management:

ME & Children Discussion by Dr Speight Part 1  here

ME & Children Discussion by Dr Speight Part 2  here

'ME in Children and Adolescents' Presentation hosted by Sheffield ME Group here

 

 

 

 

Feedback from a parent of a child with ME in Ireland

“I wanted to share the common symptoms (which in children have slight differences to adults), as this illness is massively under diagnosed. Awareness of this condition is the only thing which will lead to prompt diagnosis.

-Complaining of being tired, poor sleep (difficulty getting to sleep, restless during sleep), sore throats, headaches and muscle pains in legs and arms. Visibly lethargic in evenings

-Stomach issues, pain when eating, nausea, loss of appetite intermittently (usually when exhaustion is at its worst)

-Difficulty concentrating - which may be seen as a deterioration in school performance and slow progress on homework

-Sick more often due to poorer immune system

-Irritability, sensitivity to noise and light, chemicals, creams, that previously caused no issue

*Key Symptom - PENE- Post Exertional Neuro-Immune Exhaustion, this is when a child has a busy day or busy few days and will be exhausted for days or weeks after, all symptoms will be worse during this time.

The silver lining to being ill myself is that I was able to recognise the signs and push the doctors to address it. There are many cases of children all over this country where GPs with no knowledge or training in ME, gave the incorrect diagnosis to families. They were told it was a long-acting virus and told to continue with normal activity.

Unlike with adults, children have a much better chance of recovery if treated correctly, most recover within 3 years. However, these children who received an incorrect diagnosis continued, on the advice of their doctors with sports activities and to attend school full time. 

I know of one child who is now ill for 6 years, and only received a diagnosis last year. Had he been given the correct treatment plan; he might very well be fully recovered. The ignorance of the majority of the medical community in this country is doing real damage to these children.  Keep in mind ME can develop gradually, but often develops following a severe illness, in children, we see it often after glandular fever.”

 

 

Managing Paediatric ME

Information about Managing Myalgic Encephalomyelitis (ME) in adults compiled by ME Advocates Ireland (MEAI) may have some useful pieces for paediatric ME. The information includes notes on Energy and Step by Step Symptom Management as well as notes on Early Diagnosis, Pacing (activity management) & Resting, Energy Envelope Technique, Medical Treatments, other treatments and management strategies e.g., managing sleep & diet; using a Heart Rate Monitor, and managing relapses and adrenaline surges in Myalgic Encephalomyelitis (ME).

We briefly refer to three important management techniques here: - 

Early Diagnosis 

 

Early Diagnosis is essential in ME.

The aim should be to provide people with an early and accurate diagnosis which will allow patients to receive appropriate treatments in a timely fashion, which may lessen the severity and impact.

 

Early diagnosis should enable a comprehensive plan of management to be agreed between the patient and doctor which should cover symptom management and symptom relief, which may lessen the severity and impact.

Developing an agreed plan of appropriate management should prevent inappropriate or harmful approaches taking place – e.g. attempting to ‘work through illness’ – and should therefore reduce the risk of a more prolonged and severe illness occurring.

 

NB: The 6-month waiting period before diagnosis is not required as per the ICC 2011.

 

Energy Management   

 

Energy management strategies of pacing and resting for those with mild, and moderate ME, and some people within the severe category, are crucial self-management strategies for ME as they minimise harm caused when patients undertake activity beyond their capacity and trigger a post-exertional response i.e., PENE, also referred to as PEM by others. 

The aim of pacing is to minimise or avoid triggering PENE, by keeping physical and cognitive activity within the available energy reserves, often referred to as the energy envelope.  

 

Step by Step Symptom Management  

 

ME patients typically present with a multitude of symptoms indicating a multi-system disorder. And individuals have different clusters of symptoms. This can be overwhelming for both the clinician and patient to work through. However, by taking a structured, step by step approach, health professionals can work with the patient to rank their symptoms and address them one at a time, starting with the most debilitating/disruptive. This can be done using the De Paul Symptom and Severity questionnaire or the doctor and patient can discuss the patients most debilitating and severe symptoms.

 

ME patients are typically sensitive to pharmaceuticals, so it is advisable to start on low doses and titrate up slowly. 

More on these three important management strategies and all other strategies previously listed, via link below: 

 

Managing and Treating Myalgic Encephalomyelitis (ME)

Essential Resources & Tools for Managing ME - Resources you can use to collaborate with your child’s healthcare provider (GP, specialists) and other documents which can be used to educate medics further about ME

Some of the documents are questionnaires previously mentioned in the section on diagnosis which can to completed by you, or by you and your child together to track your child's symptoms and severities. All documents can be emailed  to your child's doctors and other healthcare parctitioners involved with your child's care, and the completed questionnaires in particular printed and handed to the doctor to discuss at a medical appointment.

•          International Consensus Criteria and Primer for Adults & Paediatrics here and here. 

The Primer (2012) is a guideline written about and for Myalgic Encephalomyelitis (ME) in Adults & Children. Each child (all young people) will have his/her own unique combination of the ME criterial symptoms. The onset of ME in children often occurs around twelve years of age but it has been diagnosed in a child who was two years old. See paediatric considerations pages 9 & 19 of the International Consensus Primer for Adults and Children. 

 

 

 

•          Frontiers Paediatric ME Primer (Myalgic Encephalomyelitis Diagnosis and Management in Young People: A Primer) Has advice re schools, education plans etc. It has general Paediatric advice, and the writers are all very experienced ME Paediatricians worldwide. This primer has been written to provide the information necessary to understand, diagnose, and manage the symptoms of ME in children and adolescents, here

 

 

•          The DSQ- PED & PEM Questionnaires from De Paul University.  

The DSQ- PED consists of a parent form and a child form. Parents can track their child's symptoms by filling in the symptom questionnaire and use as part of the management working with the child's doctor(s). Medics can collect data from both children and their parents to obtain a thorough understanding of the child's ME. Children under the age of 12, or those with reading or comprehension difficulties, complete this questionnaire with the assistance of a parent or guardian. These forms are based on research by De Paul University.

 

DSQ-Ped (Parent Report Form): Parent Form

 

DSQ-Ped (Child Report Form): Child Form

PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)

As we said previously, Post Exertional Neuroimmune Exhaustion malaise (PENE) is a key symptom of Myalgic Encephalomyelitis (ME). PENE is referred to as PEM by others. The PEM questionnaire by De Paul is a questionnaire on the distinctive post exertional response in ME, i.e., PENE as per the ICC, an essential criterion for an ME diagnosis. 

 

By answering the questions, you get an idea of how ‘activity’, anything ythe patient does physically, cognitively, emotionally, affects them and what their individual post exertional response is, i.e., what symptoms occur and increase. 

 

Every person with ME is different. The post exertional response for a lot of people might not occur straight away and tends to be delayed 24 hours or 48 hours after activity. The questionnaire includes key indicators that show within answering a set of questions that it sounds like ME.

This is the link to the De Paul Post Exertional Questionnaire.

•          Workwell Foundation’s letter re inappropriateness of GET for healthcare providers who do not realise the harms caused by GET and CBT on children with ME, i.e., those who try to push GET and CBT on you or a patient in your care. Letter here

 

 

•          An excellent presentation re ME in Paediatrics by Dr Nigel Speight and Debbie Burgess of the Tymes Trust which includes issues e.g., education, social services, lack of diagnosis, schools ignoring education guidance, difficult medics and much more. 

Dr Nigel Speight, foremost UK expert in ME in children and young people, talks about 'ME in children and young people, an ideal approach compared with less-than-ideal approaches'.

Debbie Burgess, adviceline team director for the TYMES Trust, presenting the charity and their services dedicated to children and young people with ME and their families.

 

 

Keeping a Diary/Journal

It helps to keep a diary of symptoms so that children/adolescents can take this to their GP. This could help them remember important details during their healthcare visit. A journal can also include information on the child’s/adolescent’s pre-illness life so that a before and after type document could be used in cases like applying for welfare, providing evidence for social services, and communicating effectively with Schools.

Keeping a journal for a child/adolescent with ME could help keep track of the child’s/adolescent’s activities and what leads to worsening of child’s/adolescent’s symptoms, helping to identify the effects of the illness on daily activities as well as the effects of rest.

 

 

Management and Advice about Severe Paediatric ME

 - Dr Nigel Speight (UK) offers a series of case reports of individual cases as a means of illustrating various points regarding clinical presentation, together with general principles of appropriate management: Severe ME in Children

 - Myalgic Encephalomyelitis (ME) Diagnosis & Management for Doctors and Other Healthcare Providers by ME Advocates Ireland (MEAI) here includes many other useful notes that can be applied to Paediatric ME, including important notes about Managing Severe ME in Section 4 & 5, which includes important topics such as: 

• Managing Severe ME; 
• Problems and Challenges for the Patient with Severe ME; 
• The Value of Home Visiting by the Doctor;
• How to Create an ME Accessible Setting;
• Paralysis and Important Notes in the event where a patient enters a crash/paralyssis state; 
• Malnutrition;
• Gurney Transportation for patients who must remain lying down.

 

 - Educational Film for Medics and others: Severe and Very Severe ME, Symptoms & Management & Hospital Admission Films

Supports Online 

·    Tymes Trust is the only national ME charity in the UK dedicated to children & young people with ME & their families. They played a major role in producing the children's section of the Dept of Health Report on ME (2002). See link to Tymes Trust for useful information on ME in paediatrics: www.tymestrust.org

 

(Unfortunately, there is currently no similar charity-support specifically for children with ME in Ireland but there are supports via national charities & closed Facebook groups that were set up to support adults, children & their families.)

 

·   Parents of Children with ME/CFS, UK facebook group (private) specifically for parents & carers of kids with ME here

 

·   ME Ireland, a very supportive closed Irish Facebook page called ME Ireland whose members are parents of children with ME which can be accessed here

 

 

 

 

 

 

Notes about inappropriate referrals and inappropriate treatments !!! 

IMPORTANT WARNINGS

GRADED EXERCISE THERAPY (GET) or any programme that uses fixed incremental increases in physical activity or exercise CAN CAUSE HARM

Graded Exercise Therapy is NOT the same as Pacing. GET requires the patient to gradually increase activity over a period, potentially pushing them to repeatedly trigger the PENE response described further above. GET has been reported by many patients, scientists & some orgs to be unhelpful and harmful and has left some patients significantly worse than they were before they started. 

Given that PENE is the hallmark symptom of ME, GET is not an appropriate treatment for people with ME.

 

Graded Exercise Therapy (GET) warnings explaining the dangers of GET from the 25% ME Group entitled '25% ME Group stance on Exercise' here

 

Understanding the Dangers of Graded Exercise Therapy Video from Dialogues for ME here 

 

More from Dialogues for ME about the dangers of GET here 

 

Further Warnings

Do Not Offer the Lightning Process, or therapies based on it to people with ME.

Talking therapies such as CBT can at best provide psychological support, and at worst contribute to harm by using precious energy, or misinforming patients. CBT does not cure ME and must not assume people have abnormal illness beliefs and behaviours as an underlying cause of their ME.

Current default referrals to psychiatry where ME has been diagnosed or is suspected can be inappropriate and harmful because the referral can delay diagnosis and management for the person with ME which not only adds to a feeling of being dismissed and denied care but can often lead to deterioration and worsening severity.

Further Useful Information

Communicating With Your Child's Doctor - Helping Your Doctor to Understand Myalgic Encephalomyelitis (ME): ME Advocates Ireland (MEAI): Communicating With Your Doctor - Helping Your Doctor to Understand Myalgic Encephalomyelitis

 

Educational Films about ME

Dialogues of a Neglected Illness – Awareness Raising videos for HSE staff

 

Patients Accounts of Symptoms film

Post Exertional Malaise film

The Current Situation re Paediatric & Adolescent ME in Ireland

 

i.            As in previous posts re Adults with additional characteristics

ii.           Many GPs believe children ‘can’t get ME’

iii.          Parents have, in some cases, desperately ill children, but efforts to be heard create suspicion of safeguarding issues, adding further pressure to a family (Social Services,Tusla)

iv.          Parents with children with moderate ME are encouraged to push their child into ‘normal’ activities, which, given the pathophysiology of ME creates a high probability of deterioration.

v.           GPs refer children to Paediatricians in local hospital groups, where the same lack of knowledge and attitudes referred to with reference to GPs are found

vi.          Referrals to the Children’s Hospital Group raise specific questions, as, according to PQs, the group continues to advocate CBT & GET, both designed to dismiss and deny the child’s experiences of their body by requiring them to ‘push through the warning signs as they are unhelpful illness beliefs’’ which has the potential to cause psychological harm to a child who is ill.

The AHRQ lowered their confidence in CBT & GET in 2016.
Other orgs have dropped GET too eg Cochrane, CDC, NICE
The HSE dropped GET & CBT from their website in 2017 after a lot of lobbying by advocates. However, their site remains empty of any information re ME, and both psych therapies are still being suggested for ME across their services.
 

vii.         A further issue arises when school attendance falls below accepted levels, as neither EWO’s, Social Services or Tusla understand ME or the potential for causing harm by forcing a child to attend school when they are struggling to manage the basics of daily life.

viii.       The lack of GP knowledge means that the ‘early’ support system which contextualises the clinical presentation and defines, through discussion with the child and the family, what is and is not possible in terms of activity, is absent.  This lack of clinical support and guidance to those in community services leaves a family and the child without the supports they needs and in fear of the uninformed judgements being made about them, therefore their problem is increased by both health and social services rather than them being supported.

ix.          This absence of clinical context provided by the GP increases the risk of harm, to the child, possibly causing permanent harm, and lowers the opportunity for remission/recovery which a child, effectively managed, has a greater chance of achieving than an adult.

x.           When will the HSE & Government become sufficiently aware of the harm being done to children and families across the country who are suffering due to the lack of knowledge of ME and that the actions of Government funded organisations could reasonable be regarded as having implications for safeguarding action to be taken, if Clinical staff had the evidence-based knowledge about ME that the National Healthcare Charter commits to.

xi.          Once a child is of an age to leave Children’s services, there is no ‘joined up’ service provision or referral route. Many Paediatricians retain their patients beyond the age ‘cut off point’ as there is nowhere to send them.

xii.         For those who are referred to adult services there is no transfer of files from Paediatric to Adult services.  Files are simply closed and stored away so for those with ME it is like starting the journey, into the unknown, all over again.

xiii.        The risk of poor experiences in Paediatric services due to having ME can result in caution/fear when entering Adult services given the lack of knowledge or consistency in acknowledgment that ME is a WHO Classified neurological disorder.

 

Until there is an objective framework of standards, based on a sound and quality evidence base, there can be no accountability.

The HSE cannot identify data on those with ME, Paediatric or Adult, by age range, or severity. How can the HSE hope to address a situation if it does not know what the territory is?

Qualitative and quantitative data are required for the HSE to understand the complexity of the current situation re ME. Once we know where we are and have entered into a planned and well organised process then we can measure the outcome to identify both the improvements achieved and to identify the next improvement cycle. It is also vital to assess the process of change as well.

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HSE Healthcare Charter for Children here

 

Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: AHRQ Addendum 2016 here (see excerpts below) 

 

Myalgic Encephalomyelitis: Symptoms and Biomarkers here (see excerpts below)

 Metabolic features of ME here (see excerpts below)

 

Excerpts from the above documents

 

Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:

AHRQ Addendum 2016:Conclusion   Page 13

 

Although future studies should refrain from using the Oxford (Sharpe, 1991) case definition as eligibility requirements, this early work provided a foundation on which future work can expand. This addendum has delineated differences in treatment effectiveness and harms according to case definitions, highlighting studies that used the Oxford (Sharpe, 1991) case definition and how these studies impacted our conclusions. Additionally, results of studies evaluating CBT have been considered independently from other counseling and behavioral therapies. Our sensitivity analysis would result in a downgrading of our strength of evidence on several outcomes which can be attributed to the decrease in power, dominance of one large trial, or lack of trials using criteria other than the Oxford (Sharpe, 1991) case definition for inclusion. Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS. Link here.

 

 

 

Myalgic Encephalomyelitis: Symptoms and Biomarkers: Introduction Page 701

 

Even though the exact mechanisms which underlie ME have not been fully elucidated, we now have more empirical evidence, making it possible to begin to develop a more empirically based case definition. As such, there is a need to identify critical features of these illnesses in order to reduce criterion variance, a major source of diagnostic unreliability. For example, we do know that in contrast to the Fukuda CFS criteria, both the Canadian ME/CFS criteria and the ME-ICC criteria identify a smaller subset of patients with more severe symptoms and greater physical functioning impairments than Fukuda. However, these latter criteria require a larger set of symptoms for a diagnosis, and as patients with higher numbers of somatic symptoms tend to have higher rates of psychiatric disorders, difficulties with differential diagnoses become more prominent. Along these lines, case definitions with more somatic symptoms might inadvertently increase rates of psychiatric co-morbidity.

 

Recently, the Institute of Medicine issued a report that proposed a new name (Systemic Exertion Intolerance Disease, SEID) and case definition that included the following 4 symptoms: substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities; post-exertional malaise, unrefreshing sleep; and at least one of the two following symptoms: cognitive impairment or orthostatic intolerance. Whereas the Fukuda criteria, the ME/CFS Canadian criteria and the ME-ICC criteria excluded other medical and psychiatric conditions that might have produced the fatigue, the new SEID criteria had a different position regarding exclusionary conditions. More details about exclusions are provided within the IOM’s SEID Report Guide for Clinicians (p. 4), where it states: “The presence of other illnesses should not preclude patients from receiving a diagnosis of ME/CFS (SEID) except in the unlikely event that all symptoms can be accounted for by these other illnesses.”

 

CONCLUSION Page 722

 

In summary, having a diagnostic system as illustrated in this article can provide integration of the disparate findings that have been documented with patients having ME. At the present time, many of the findings are based on small samples, may have methodological issues and use varying case definitions. There is currently little agreement on reproducible biomarkers of ME, due in part to ambiguity in how biomarkers are defined and used. Clearly, there is a need to adopt a common ME case definition, and then to use standardized measurement devices to collect both biological and self-report. Larger data sets can also help guide investigators toward identifying cardinal symptoms of ME, and when such data sets are compared with controls, the process of selecting items with good sensitivity and specificity is enhanced. These types of developments, along with sophisticated statistical approaches, could be used to both define ME and specify the ways of measuring it with a high degree of reliability and validity. Link here

 

 

 

Metabolic features of chronic fatigue syndrome Pg E5477  Hypometabolism, Dauer, and CFS.

 

•          Our results show that the metabolic features of CFS are consistent with a hypometabolic state.

•          The decreases in these metabolites correlated with disease severity as measured by Karnofsky scores

•          Dauer, which means persistence or long-lived in German, is an example of one well-studied system. The developmental stage of dauer is a hypometabolic state capable of living efficiently by altering a number of basic mitochondrial functions, fuel preferences, behavior, and physical features.

•          Dauer is comprised of an evolutionarily conserved and synergistic suite of metabolic and structural changes that are triggered by exposure to adverse environmental conditions.

•          Entry into dauer confers a survival advantage in harsh conditions.

•          When the dauer response is blocked by certain mutations (dauer defectives), animals are short-lived when exposed to environmental stress.

•          These mutations show that the latent ability to enter into a hypometabolic state during times of environmental threat is adaptive, even though it comes at the cost of decreasing the optimal functional capacity.

•          Similar to dauer, CFS appears to represent a hypometabolic survival state that is triggered by environmental stress.

•          The metabolic features of CFS and dauer correspond to the same pathways that characterize the acute CDR and metabolic syndrome but are regulated in the opposite direction.

•          A prediction based on these findings is that patients with CFS would be more resistant to the constellation of hypertension, dyslipidemia, central obesity, and insulin resistance that increase all-cause mortality associated with metabolic syndrome , but at the cost of significant long-term disability, pain, and suffering. Link here

 

Part 2  - Home Education

About Myalgic Encephalomyelitis (ME) in Children and Young People includes information about Home Education - Home Schooling & Home Tuition here

 

 

 

 

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