diagnosis of mecfs · diagnosis. a 2016 mea website survey involving 656 respondents found that of...

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September 2020

DIAGNOSIS OF ME/CFS The importance of having an early and accurate diagnosis

The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n 01280 818 963 l www.meassociation.org.uk n [email protected] n Registered Charity Number 801279

© ME Association 2020. Reproduction is not allowed without the written permission of The ME Association

by Dr Charles Shepherd Hon Medical Adviser to the MEA

Diagnosis of ME/CFS - The importance of having an early and accurate diagnosis was written by Dr Charles Shepherd (pictured above), Trustee and Hon Medical Adviser to The ME Association.

© The ME Association, 2020 All rights reserved.

Reproduction, in full or in part, is not allowed without the written permission of The ME Association.

ME CONNECT HELPLINE: 0344 576 5326

INTRODUCTION ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex multisystem disease with a population prevalence of at least 0.2% to 0.4%. So it probably affects between 2 and 4 per 1,000 of the population and up to 250,000 people in the UK. There is a wide range of severity at all stages of the illness. Around 25% are severely affected at some stage – being house-bound or bed-bound – and this can create additional challenges when making a diagnosis.

Many people experience a long delay in obtaining a formal diagnosis. A 2016 MEA website survey involving 656 respondents found that of those who were diagnosed by a doctor:

n only 18 % were diagnosed within six months of the onset of symptoms.

n 15% waited between 7 and 12 months.

n 17% waited between 13 and 24 months.

n 26% waited between two and five years.

n 19% waited more than five years.

The remainder could not remember, or had never received confirmation of the diagnosis from a doctor.

Fatigue is a very common symptom and some people with chronic fatigue are being misdiagnosed with ME/CFS when they have another, sometimes perfectly treatable, explanation. ME/CFS is a distinct clinical entity with a characteristic set of core symptoms. It should not be used as a diagnostic label for people with unexplained chronic fatigue.

WHY IS MAKING AN EARLY AND ACCURATE DIAGNOSIS SO IMPORTANT? n To reduce the likelihood of ME/CFS taking a more prolonged and severe course.

n To check for other conditions that can present with similar symptoms.

n To prevent harmful approaches to management such as ‘working through fatigue’ and inappropriate exercise programmes.

n To organise a comprehensive management plan involving activity and energy management; symptom relief; information and support relating to education, employment and sickness benefits.

TAKING A GOOD CLINICAL HISTORYThe commonest age of onset is during the early 20s to mid-40s. However, all age groups, including children and adolescents, can be affected. ME/CFS affects all social classes and ethnicities.

ME/CFS is often triggered by an acute infection. This is followed by a ‘failure to recover’ with on-going flu like symptoms, feeling generally unwell and the development of characteristic ME/CFS symptoms. Other immune system stressors – e.g. vaccinations – occasionally trigger ME/ CFS.

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September 2020DIAGNOSIS OF ME/CFS


A gradual onset occurs in a minority with no clear precipitating event.

Adequate time should be allowed for taking a detailed history. This should include:

n past medical history.

n previous blood transfusion – to help exclude the possibility of hepatitis C infection.

n social and family history.

n recent overseas travel – ME/CFS can be triggered by tropical infections such as dengue.

n medication use – including supplements and alternative treatments.

n psychological and mental well being.

n the impact of symptoms on family life, education or employment.

Where symptoms are atypical or ‘red flag’ in nature, occur in more elderly people, or are more pronounced than is normally found in ME/CFS, a more thorough clinical assessment is essential.

DIAGNOSTIC CRITERIA AND CHARACTERISTIC CORE SYMPTOMS There are over 20 different diagnostic criteria for ME/CFS - the most recent being from the Institute of Medicine (IoM) in America. Most are designed for selecting homogenous groups of people for research purposes. They often have limitations for clinical practice diagnosis – where a more pragmatic approach is required.

There is no generally agreed diagnostic criteria for ME/CFS

in a clinical setting and most criteria concentrate on the presence of core symptoms. Making a diagnosis therefore has to be based on a cluster of characteristic symptoms along with a careful consideration of other possible explanations.

A clinical diagnosis requires an inclusive approach – so it is important to be able to include people with a co-existing diagnosis of other conditions that can cause chronic fatigue in a way that many of the definitions used for research purposes exclude.

The key diagnostic feature is post-exertional malaise/symptom exacerbation whereby symptoms are amplified by physical and/or mental exertion with a delayed impact – later the same day, the next day, or even later. This is then followed by a slow recovery period. The amount of activity that provokes symptom exacerbation can be very minimal.

Core diagnostic symptoms:

n activity induced muscle and brain fatigue whereby there is a failure to create enough energy to continue with and sustain a wide range of physical and cognitive activities that would not normally cause any problem. There is no loss of motivation as occurs in the chronic fatigue that often accompanies depression.

n cognitive dysfunction involving problems with short-term working memory, concentration and attention span, information

processing and retrieval, planning and organising thoughts, word-finding ability and dysnomia.

n unrefreshing sleep pattern may include hypersomnia (i.e excessive sleep requirements) in the early post-infection stage, fragmented sleep and myoclonic movements or restless legs syndrome later on. In more severe cases there may be a reversal of normal sleep rhythm (i.e, being awake at night but sleeping during the day). Excessive daytime sleepiness should raise the possibility of obstructive sleep apnoea - especially where there is snoring, early morning headaches and the person has a collar size above 16 inches (female) or 17 inches (male).

n autonomic nervous system dysfunction/dysautonomia involving orthostatic intolerance (an inability to sustain physical or mental activity whilst standing) and in some cases orthostatic hypotension (a fall in blood pressure on standing resulting in dizziness or feeling faint) or postural orthostatic tachycardia syndrome (a significant rise in pulse rate on standing).

Pain can affect muscles (myalgia), joints (arthralgia) and nerves (neuropathic) but is minimal or not present at all in a minority of people. Pain is often difficult to alleviate with simple analgesics and may be accompanied by sensory disturbances/paraesthesiae.

The above list of core symptoms is based on the five key symptoms – disabling fatigue, post-exertional malaise/symptom exacerbation, cognitive dysfunction, orthostatic intolerance, unrefreshing sleep - in the IoM diagnostic criteria. Two major criticisms of the IoM criteria is that it requires symptoms to be present for at least six months and very little emphasis is placed on the importance of considering the possibility of other causes of an ME/CFS like illness. Revised guidance from NICE on the diagnosis of ME/CFS will appear in the new guideline. This is due to be published in April 2021.

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Other symptoms may include:

n poor temperature control/thermoregulation including increased sensitivity to hot and cold environments, sweating episodes, feeling feverish.

n on-going flu-like symptoms including sore throats and tender glands without pathological enlargement.

n intolerance to alcohol, chemicals and medications - especially psychotropic (antidepressant) drugs.

n headaches of a new type or severity that may have a migrainous quality.

n sensory disturbances including paraesthesiae (‘pins and needles’) and increased sensitivity to noise (hyperacusis) and bright light (photophobia).

n digestive disturbances consistent with irritable bowel syndrome (i.e. abdominal pain, bloating, change in bowel habit) may develop following the onset of ME/CFS and can be exacerbated by certain foods (e.g. wheat or dairy products).

Symptoms characteristically fluctuate in severity, throughout the day, day to day, and from week to week. The pattern of symptoms, along with severity, may change over time. So people will often describe a pattern of ‘good days’ and ‘bad days’.

Overall, there should a substantial (50% or more) and sustained reduction in both physical and cognitive/mental activity. This results in a substantial reduction in the person’s ability to carry out pre-illness levels of occupational, educational, social or personal activity.

Where the diagnosis has been delayed the clinical presentation is likely to be more complex with a wider range of symptoms and symptom severity.

Exacerbations and relapses are commonly caused by infections, trauma and other immune system stressors. This can include a pre-menstrual or menstrual exacerbation in some cases.

People with severe ME/CFS are often very sensitive to bright light, noise, movement, touch and smell. They may have substantial neurological impairments including atypical seizures , unwanted muscle activity/myoclonus and speech problems. Swallowing difficulties may require nasogastric (tube) feeding.

PHYSICAL EXAMINATION A full clinical examination should include:

n checking for anaemia, thyroid gland enlargement, pathological lymphadenopathy and skin signs of systemic disease such as those found in Addison’s disease.

n pulse and blood pressure supine and standing .

n checking for joint hypermobility in younger patients .

n recording and monitoring weight in children and people with severe ME/CFS.

NB: A study from the ME/CFS Biobank indicates that hand grip strength has the potential to be used as a clinical biomarker and a marker of disease severity (Nacul L et al 2018).

NB: People with ME/CFS show characteristic abnormalities which are consistent with post exertional malaise/symptom exacerbation when they carry out a two day cardiopulmonary exercise test (CPET). This test has the potential to be used for both diagnosis and management (Keller BA et al 2014).CPET testing is not widely available in the UK for people with ME/CFS.

BASELINE INVESTIGATIONS There is no diagnostic blood test for ME/CFS. However, a number of baseline investigations are essential in order to check for common conditions that can cause chronic fatigue.

The list should include:

n full blood count and differential.

n serum ferritin .

n ESR and CRP (C-reactive protein).

n metabolic screen for calcium, phosphorous, urea and electrolytes, total protein, albumin and globulin, blood sugar and/or HbA1C.

n coeliac disease screening test – IgA endomysial or tissue transglutaminase.

n creatine kinase (an enzyme biomarker for muscle disease).

n random blood sugar and/or HbA1C.

n serum creatinine.

n liver function tests.

n thyroid function tests.

n urinalysis for protein, blood and glucose.

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The results should all be within normal limits. Where abnormalities occur, consideration must be given to other diagnostic explanations.

NB: Results from a study of blood samples collected by the ME/CFS Biobank indicate that the level of creatine kinase (an enzyme that is an indicator of muscle inflammation) can be significantly reduced in people with severe ME/CFS and that this is a potential biomarker for severe ME/CFS (Nacul L et al, 2019).

A wide range of immune system abnormalities occur in ME/CFS, including changes in cytokine status and the presence of low levels of some autoantibodies. However, none of these abnormalities are sufficiently sensitive or specific to be used as diagnostic biomarkers in our current state of knowledge.

FURTHER ASSESSMENT AND INVESTIGATIONIndications:

n atypical symptoms (e.g. joint pain accompanied by swelling).

n red flag symptoms or signs (e.g. weight loss, significant lymphadenopathy, fever, focal neurological signs, muscle wasting, generalised pruritis, dry eyes and mouth).

n symptoms not normally associated with ME/CFS (e.g. breathlessness or chest pain suggestive of cardiorespiratory disease).

n history, examination or baseline test results suggest other possible diagnostic explanations.

Examples:

n autoantibody screen – where a rheumatological or autoimmune condition is possible.

n Schirmer’s test for dry eyes – possibility of Sjögren’s Syndrome.

n screening for infectious diseases – giardia, hepatitis B/C, HIV, Lyme disease, Q fever, toxoplasmosis.

n Synacthen test – where Addison’s disease is a possibility

n serum hydroxyvitamin D – in housebound patients.

n NASA 10-minute lean-to test or tilt-table testing where there is significant autonomic system dysfunction.

n Epworth sleepiness score or the Pittsburgh Sleep Quality Index where a primary sleep disorder is possible.

n polysomnography where sleep disturbance strongly suggests a primary sleep disorder such as sleep apnoea.

DIFFERENTIAL DIAGNOSISPatient evidence and data collected by NHS specialist referral services indicates that a significant number of people are being misdiagnosed as having ME/CFS. Of 260 people who attended the Newcastle ME/CFS referral service with a possible diagnosis of ME/CFS, 40% were found to have another explanation. 47% had another medical disorder; 20% a primary sleep disorder; 15% psychiatric/psychological illness and 4% cardiovascular disease (Newton JL et al, 2010). This is often due to a failure to carry out a proper clinical assessment and consider other possible explanations for an ME/CFS like illness.

Examples include:

Addison’s disease Coeliac disease Depression Fibromyalgia Haemochromatosis Hepatitis C Hypothyroidism Malignancy Multiple sclerosis Myasthenia gravis Primary biliary cirrhosis Primary sleep disorders such as sleep apnoea Rheumatic disease – e.g. Sjögren’s Syndrome Vitamin D deficiency

Although unlikely, it should be noted that the common conditions being checked for do sometimes co-exist with ME/CFS.

So having hypothyroidism does not automatically mean that the person could not have ME/CFS as well.

TIMESCALE Most ME/CFS research criteria stipulate that a diagnosis should only be made after six months of symptoms. In clinical practice this should normally be regarded as the endpoint of the diagnostic process.

A working or interim diagnosis is better than no diagnosis at all and allows for active management to begin. A confirmatory diagnosis often needs to be pieced together through a series of consultations.

Up to six weeks: A working diagnosis of post-viral fatigue syndrome can be made where appropriate. Where a child has missed around four weeks of school, action must be taken to speed up the diagnostic process.

At three months: A provisional diagnosis of ME/CFS can often be made if symptoms persist and no other explanation is found. Diagnosis should normally have been confirmed in children and adolescents.

By four months: The provisional diagnosis should have normally been confirmed in adults. A management plan should now be in place.

Where there is continuing uncertainty about the diagnosis, or symptoms are severe, patients should be referred to a hospital-based ME/CFS referral service.

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CHILDREN AND ADOLESCENTS n ME/CFS has been reported in children as young as five. There appears to be a peak onset around 13 to 15.

n ME/CFS can be misdiagnosed as a behaviour problem or school phobia.

n Children and adolescents may present differently to adults. Symptoms that are more common or prominent include stomach pain, nausea, headache and loss of appetite. There is growing evidence to indicate that hypermobility syndromes are more common in children and adolescents.

n ME/CFS is reported to be the commonest cause of long-term sickness absence from school.

n Children should be known to community paediatric services and under consultant care if they are unable to attend school on a regular basis.

SPECIALIST REFERRAL Where there is uncertainty about the diagnosis, or symptoms are severe, patients should be referred to a hospital-based ME/CFS service.

If there is not a suitable ME/CFS referral service nearby, the Countess of Mar has established through a House of Lords parliamentary question that

people can be referred elsewhere to an NHS service/consultant of their choice:

https://tinyurl.com/yxpuknoe

The MEA website has contact details of all the multidisciplinary hospital-based referral services for adults and children throughout the UK. While there are a considerable number of adult services in most parts of England, there are very few NHS referral services in Northern Ireland, Scotland and Wales. Paediatric referral services are very limited throughout the UK. Website link:

https://tinyurl.com/y2koo5m7

The MEA has an information leaflet covering Specialist Referrals in more detail.

FURTHER INFORMATION n The MEA purple book - ME/CFS/PVFS: An Exploration of the Key Clinical Issues - summarises and references key information on research, clinical assessment and management.

n The MEA has a comprehensive range of information leaflets covering all aspects of management: symptom relief, benefits, employment, nutrition etc.

n The ME Connect helpline, which is open every day of the week, provides information and support to people with ME/CFS. Contact details can be found on the MEA website: www.meassociation.org.uk

n The Chief Medical Officer’s Report on ME/CFS, NICE guideline on ME/CFS, Canadian diagnostic criteria, and Institute of Medicine diagnostic criteria can all be downloaded from the MEA website document archive > Policies and Documents section.

REFERENCESInstitute of Medicine Report:

Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); 2015 Feb 10. Summary. Available from: https://www.ncbi.nlm.nih.gov/books/NBK284892/

Nacul L et al. Hand grip strength as a clinical biomarker for ME/CFS and disease severity.

Frontiers in Neurology, 2018 November 27; 9: 992. doi.org/10.3389/fneur.2018.00992

Nacul L et al. Evidence of clinical pathology abnormalities in people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) from an analytical cross-section study.

Diagnostics 2019,June; 9 (2): 41. Published online on April 10 2019: doi: 10.3390/diagnostics9020041

Newton JL et al. The Newcastle Chronic Fatigue Syndrome Service: not all fatigue is the same.

Journal of Royal College of Physicians Edinburgh. 2010, 40, 304 – 307

Keller BA et al. Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2 peak indicates functional impairment, 2014.

Journal of Translational Medicine 12: Article number 104

https://tinyurl.com/yxpuknoe

https://tinyurl.com/y2koo5m7

http://www.meassociation.org.uk

https://www.ncbi.nlm.nih.gov/books/NBK284892/



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DISCLAIMER

Drug and medical information contained in this leaflet is not intended to be a substitute for medical advice or treatment from your doctor.

The ME Association recommends that you always consult your doctor or dentist about any specific problem. We also recommend that any medical information provided by The MEA is, where appropriate, shown to and discussed with your doctor or dentist.

The information and guidance contained in this leaflet is a summary of all the key issues relating to making an early and accurate diagnosis of ME/CFS. More detailed information on clinical assessment, differential diagnosis, investigations and physical examination can be found in the 2020 edition of the MEA purple book – ME/CFS/PVFS – An Exploration of the Key Clinical Issues.

https://tinyurl.com/y4xemla9

ME CONNECT

We’re here to help 0344 576 5326

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then

calls will normally come out of your inclusive minutes.

Do you need to talk?

ME Connect is the telephone helpline

service of the ME Association.

It provides information and support for

people with ME and those

who live with or care for them.

ME Connect provides a safe and

understanding environment for people

with ME so that they know they are

being heard and understood.

CALL 0344 576 532610am-12noon, 2pm-4pm, 7pm-9pm

every day of the year

“Thank you for being there,

you provide a wonderful service”

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and the tools to cope”ME Connect is a member of the

Helplines Partnership which promotes high standards.

MEA Membership:For just £18 a year you can help support others affected by M.E. and will receive the excellent and exclusive ME Essential magazine delivered straight to your door.

Subscriptions are a vital part of our charity income and – together with donations – they allow us to help make the UK a better place for people with M.E.

Full Membership is available to all adults with ME/CFS, carers and anyone with an interest in the disease.

Annual membership costs:

n £18.00 (UK residents and BFPO) n £24.00 (Mainland Europe including Republic of Ireland) n £30.00 (Rest of the World)

Each full member is entitled to vote at our Annual and Extraordinary General Meetings.

To become a member please visit https://tinyurl.com/y3j5aupc

ME Essential

ISSUE 155 n SUMMER 2020

MAJOR FUNDING ANNOUNCEMENT!Read all about it in the leaflet included with your magazine.

CORONAVIRUS Dr Charles Shepherd advises on reducing the risk of catching Coronavirus if you have ME/CFS with his new ten-point guide.

ME AWARENESS WEEK Fundraising achievements and real life stories.

NEWS AND RESEARCH The Countess of Mar retires from the House of Lords. Interviews with Professor Ronald Tompkins of Harvard Medical School and Jack Butterworth on the UK ME/CFS Biobank.

DIET AND NUTRITION Sue Luscombe, our diet and nutrition adviser, talks about ME

and the diet trends in 2020.

The ME Association website shop:The ME Association has the largest selection of ME/CFS advice leaflets in the UK on:

Medical Management Mental Health ME Connect Diet & Nutrition General Information Fundraising Leaflets Benefits & Social Care ‘To Whom It May Concern’ letters

You can download leaflets and buy gifts from our website shop.

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September 2020

ME CONNECTInformation and Support Line

The ME Association n 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF n 01280 818 963 www.meassociation.org.uk n [email protected] n Registered Charity Number 801279


ME CONNECT HELPLINE: 0344 576 5326 by Hilary Briars ME Connect Manager

INTRODUCTIONNeil Riley, Chairman of The ME Association, writes:

When you are ill with a chronic condition like ME there are many things you want to know. What treatments work, where can I find

a doctor who understands ME, where can I get guidance on filling in my benefit claim. Even more important is to hear another voice, someone who understands how ME affects everyday life. Someone who will listen.

The role of ME Connect is simple. It is there to support people with ME and their carers to make informed choices. It is there to listen to a caller and try to understand all the issues they are facing. Each year it does this for thousands of people. Of all that The ME Association does for people with ME it is our Telephone Helpline of which I am proudest. It is what a charity is all

about; giving help to those who need it at a difficult time in their lives.

Our volunteers do that every day. Why? Because it is intensely rewarding for them to help others and they want to contribute something in their lives to society. By helping others it in turn enriches their lives.

I hope you will come and join our volunteer team. They are a lovely friendly bunch. Many have or have had ME and all of them understand the illness. You’ll make friends and you’ll learn a lot. Just pick up a phone or email us. We would love to hear from you.

“It is really good that you offer this service, it is such a

relief to speak to someone who understands.”

ME CONNECTHilary Briars, ME Connect’s Manager, writes:

I am very proud of the fact that ME Connect takes thousands of calls each year and I’m equally proud of our volunteers who respond to these calls.

We are all really pleased to be able to help so many people with ME and those who care for them. However, we would like to help more people and thus we need more volunteers to take calls.

The work is rewarding. In a short call you can help a person with their problem or help a distressed caller get through their day. With so much information to hand and an understanding of ME, we can really help people.

So many callers say to us “Thank you so much for giving your time, it is just so nice to speak to someone who really understands what I am going through.”

Many of our volunteers have appreciated the fact that they can do their training and take calls in their own home. Others have said that helpline work has given them a sense of purpose and a feeling of job satisfaction.

Please do join us; you will be given a warm welcome!

“Thank you so much for giving up your time to work on this Helpline. It is just so nice to speak to someone who really understands what I am going

through.”

CALL OUR ME CONNECT SUPPORT LINE

0344 576 5326365 days a year

10am-12noon, 2pm-4pm, 7pm-9pm

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UNIVERSAL CREDIT EXPLAINEDA benefits briefing from The ME Association



July 2020

by Ann Innes

Universal Credit (UC) is a payment to help with your living costs. It’s normally

paid monthly and you may be able to get it if you’re on a low income, out of work or cannot work because you are disabled.

It is a relatively new, non-taxable benefit for people of working age that has been introduced to replace means tested benefits (excluding Council Tax Reduction, which is still claimed separately via your local authority).

UC is in its infancy and legislation is changing all the time. Therefore, please be aware that the information in this leaflet, whilst correct at time of writing, could go out of date at any time.

For the very latest information you can access the Govt. website here: https://www.gov.uk/universal-credit

Means-tested benefits are those benefits awarded to households on a low income with savings and capital below £16,000.

The means-tested benefits UC has replaced are:

n Income support (IS);

n Income-based jobseeker’s allowance (IBJSA);

n Income-related employment and support allowance (IRESA);

n Housing benefit (HB);

n Child tax credit (CTC)

n Working tax credit (WTC).

This means that if you are making a new claim or if you are currently on any of these benefits and have certain changes of circumstances, you will be asked to claim UC instead of the old ‘means-tested’ equivalent.

Universal Credit will normally be paid monthly in a single payment, directly to the person making the claim. If you think you will have a problem managing your money, you can ask for fortnightly or even weekly payments. You can also ask for your rent to go straight to your landlord.

It will be at the DWP’s discretion as to whether they allow these requests. So any written evidence from a health professional to back up your reasons for needing help managing your finances or for rental payments to your landlord, would be useful to submit with your request.

CAN I CLAIM UNIVERSAL CREDIT?You must be of working age. This usually means you must over 18 but under pension age to claim. However, in some circumstances it is possible to claim from age 16. For example, people estranged from their parents or who are disabled may be able to claim from 16 years of age.

From 15 May 2019, if you are in a couple and one member is below and the other above pension age, the couple will no longer be able to claim pension credit until they have both exceeded working age and will instead have to claim Universal Credit (if they meet the eligibility criteria).

Your savings and capital must be under £16,000. Savings and capital include any cash, money in accounts or other savings or capital you might have but excludes the home in which you live.

You must be on a low income.

You must not be in education unless you are a parent, disabled student or a young person on a non-advanced course (e.g. A-levels, GCSEs, NVQs, etc). For a full list of non-advanced and advanced courses, please follow this link to the relevant page at the UK Government website: https://tinyurl.com/y2gx58nb

You must not already be in receipt of Severe Disability Premium. This is because there is currently no equivalent amount in UC. People who currently receive a severe

This guide to Universal Credit was written by Ann Innes, (pictured above), consultant welfare rights adviser to The ME Association.

Ann has been supporting people with ME/CFS to claim the benefits they are entitled to since 2012 – when she was employed by the Stockport ME Group.

She is now in private practice helping disabled people access benefits, social care support, appropriate housing and other services.

© The copyright for this leaflet remains vested with Ann Innes.

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August 2020

This guide to nutrition in Severe ME/CFS was written by Dr Charles Shepherd (pictured above), Trustee and Hon Medical Adviser to The ME Association.

© The ME Association, 2020 All rights reserved.

Reproduction, in full or in part, is not allowed without the written permission of The ME Association.

NUTRITION ASSESSMENT IN ME/CFS

by Dr Charles Shepherd Hon Medical Adviser to the MEA

ARE SOME PEOPLE WITH M.E. AT RISK OF BECOMING MALNOURISHED?There is a great deal of positive discussion on ME/CFS internet forums about the benefits of unproven special diets, restrictive and exclusion diets, and dietary supplements.

At the same time, very little attention is being paid to the dangers of cutting out or reducing the intake of specific food groups such as dairy or wheat. And people with more severe ME may have significant problems in obtaining groceries, preparing meals, and even eating a full meal.

All of this could be having an adverse effect on their overall health. So do we need to start looking at diet and nutritional status in ME from both a clinical and research point of view?

SO WHAT’S THE ANSWER?This is a very important question. The whole issue of nutritional assessment in people with ME/CFS, along with the risk of malnutrition in those with more severe ME/CFS, is something that I will be raising during the preparation of the new NICE guideline on ME/CFS.

As this is such an important and neglected topic, I have prepared a fairly detailed reply.

Firstly, it’s worth noting that malnutrition is surprisingly common among people with chronic long-

term medical conditions. And having any form of malnutrition has an important adverse effect on health. This includes decreased immune system function, decreased muscle strength, delayed wound healing and an increased risk of falls.

It will also cause a further reduction in energy levels and exacerbate cogni-tive problems – both of which are very relevant in ME/CFS.

So a proper nutritional assessment, which includes both food and fluid intake, should form part of the medical assessment and on-going care of everyone, especially those with moderate or severe ME/CFS. And it must involve a dietitian, preferably one who has experience of seeing people with ME/CFS.

The assessment should take account of all the factors that increase the risk of malnutrition in vulnerable groups of people with long-term medical conditions.

Physical factors include the presence of nausea and/or loss of appetite, swallowing difficulties and bowel symptoms that may affect both digestion and absorption of food.

Psychological factors can include depression – if this occurs – and its effect on appetite. Social factors

involve the ability to obtain food and prepare meals.

The assessment should record the person’s normal daily intake of food and fluid in terms of total calories, carbo-hydrates, proteins, fats, sugars, vitamins and minerals and micronutrients.

For example, although fruit and vegetables are very healthy they contain very few calories. And while dairy has become a ‘bad food’ in the eyes of some it is an important source of calories, protein and calcium. Fluid intake should be in the region of five or more cups per day of water, juice, coffee, tea, etc.

https://tinyurl.com/y4xemla9

https://tinyurl.com/y3j5aupc