Malnutrition in Severe ME
Why: The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink.
How to Support: Some patients with very severe ME will require Artificial Nutrition (AN), i.e., tube feeding, either enterally or parenterally.
Problems: There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognize that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need.
About severe ME
More about Severe ME
Why does malnutrition occur in severe ME?
- One of the main causes is sheer debility, the person is just too debilitated to eat and drink sufficiently;
- Other causes include difficulty swallowing (dysphagia) and severe gastrointestinal problems in tolerating food, possibly indicative of Mast Cell Activation Disorder, and conditions such as gastroparesis may also be contributing factors;
- Healthcare providers have zero or little knowledge about ME or severe ME, therefore there is lack of knowledge re how to care for a patient who is not getting adequate nutrition;
- Misconceptions that ME patients have an eating disorder or a psychiatric condition;
- Patient and/or carers lack of knowledge re how to care for a patient who is not getting adequate nutrition or unable to chew/swallow/eat;
- The difficulty of accessing appropriate dietary support including tube feeding;
- Reluctance to tube feed can occur because of the concern that the patient will become dependent on it.
Why don't healthcare providers know about malnutrition in severe ME
- Most of the research about Myalgic Encephalomyelitis has focused on ambulant patients who are able to attend clinics. Due to the severity of their illness, severe ME patients have largely been excluded from research and are often described as ‘hard to reach';
- ME has historically received insufficient funding for research, particularly when compared to other conditions, such as Multiple Sclerosis (MS);
- Very little research looks at ways to increase participation of severely affected ME patients in research. One issue that those I with severe ME have is that multiple questionnaires and surveys with too many questions previously lead to a high dropout rate with a resultant collection of limited qualitative data of patients’ lived experiences.
What can researchers do to ensure inclusion of people with severe ME in studies
What doctors & other healthcare providers need to know
- be educated about ME and severe ME;
- know about the complexities that separate severe ME from less disabling severities in ME;
- recognise the distinctions between the illness as suffered by someone with mild or moderate ME and know that those with severe ME suffer a completely different condition, i.e., an horrendous life limiting condition that sees some patients permanently confined to bed, tube fed, suffering various hyper sensitivities, and a post exertion crisis in response to the smallest movement, or to someone being near them trying to support them;
- know that significant clinical delays experienced by patients requiring enteral or parenteral nutrition must be avoided;
- know that a malnourished patient does not have an eating disorder nor a psychiatric condition;
- know that some of the most severely affected ME patients experience serious difficulties in maintaining adequate nutrition and hydration and some will require feeding enterally, because of an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink;
- know that education among healthcare professionals and medical students about malnutrition is essential;
- know that there are isolated and neglected severe ME patients, described as the ‘hidden patient population' and 'hard to reach' due to the severity of their ME;
- know that malnutrition is surprisingly common amongst people with chronic long-term medical conditions and nd 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 cognitive problems, both of which are very relevant in severe ME.
Family, carers and others in community services also need to be educated to know about the complexities of severe ME especially about the issues around malnutrition.
Providing compassionate care for people with severe & very severe ME
- Plan for the need to see the patient in their home. Currently, most severely affected patients are confined to their home. Home-based care can be more individualized and is necessary for this group of patients when there is no other alternative;
- Patients with ME require domiciliary medical care. Positive improvements can occur in malnutrition cases with the involvement of a Home Enteral Nutrition Service (HENS). Concerns have been raised around the safety of siting Nasogastric tubes (NGTs), however, a large study has shown that with the correct protocols in place appropriately trained nurses can accurately site NGTs in the community, reference here;
- Respect the nature and severity of the patient’s disease in all clinical interactions. Ask patients and carers beforehand about any factors (e.g., fragrances, fast movements, brightly colored clothes, loud noises, bright lights, and touch) that exacerbate the patient’s specific sensory sensitivities. Minimize these factors as much as possible. Interact with patients at a pace, time of day, and length of time the patient can manage. Even home visits may tax the patient. Creative approaches may be required if the patient’s ability to speak is limited;
- Listen to the patient and/or carer. Accept the validity of the patient and/or carer’s report of symptoms and severities as well as any other serious issues related to the patient having severe ME. Gain the trust of the patient, caregiver, and family. Listen to what they report with understanding and compassion;
- People with ME, especially those with severe ME have a limited amount of energy and suffer from a post exertional response to any type of physical and mental activity no matter how minimal. Helping patients conserve their energy by providing an ME- friendly environment will help reduce the impact of attending essential medical appointments. Create a very quiet, darkened environment, as this is often helpful to severely affected patients;
- Modify or completely limit physical and mental activity;
- Develop a careful medication and/or supplement plan that is kept to a necessary minimum. It is important to discuss risks and benefits of each medication or supplement. As for all patients, potential for adverse drug interactions should be assessed;
- Be honest about the limits of medical knowledge about ME and severe ME, but reassure the patient that you will do what you can to help them;
- See the Creating an ME Accessible Healthcare Setting, Information Sheet for Doctors and other Healthcare Staff by MEAI with tips to aid a person with ME attend their medical appointment/hospital here;
- Integrate closely with other healthcare professionals, if needed, to provide the resources, services, education, and practical help needed by the patient and caregiver. Various specialty consultations may help diagnose and manage those aspects of ME with which you are unfamiliar. Engage and integrate with a targeted set of other professionals as necessary and as tolerated by the patient but please remember the less communication with the patient the better. Care must be taken not to overwhelm the patient with too many providers or too many visits. Minimize the need for additional healthcare providers where possible.
Other healthcare professionals could include physical therapists, occupational therapists, nurses, home health support, social workers, and mental health experts. Home visits by a dentist may be required or better still the severe ME patient could be seen by their dentist when already in hospital. Ensure these other professionals are knowledgeable about ME and supportive;
- Partner closely with the caregiver, if one is involved, and if needed, and communicate only with the carer to save the patient’s energy. For example, capitalize on the carer’s intimate knowledge of the patient’s illness, needs, preferences, and current status. Reserve patient visits only for those times where patient input is required or there is a need to examine the patient in-person;
- Be alert to carer stress. Community resources, local support groups, and respite services for those caring for people with ME may be helpful;
- Some severely ill ME patients may not have caregivers or family, they may be completely isolated. Be alert to their non-medical needs, such as their ability to obtain and prepare food. Ensure that all health/social/community care providers are aware that there are isolated and neglected severe ME patients, described as the ‘hidden patient population' and 'hard to reach' due to the severity of their ME. Be creative and make pragmatic approaches to reach such individuals.
Problems ME patients with malnutrition issues experience in healthcare settings
- an inability to swallow,
- severe gastrointestinal problems tolerating food,
- the patient being too debilitated to eat and drink.
Supporting ME patients with malnutrition issues
Nutritional assessment which includes assessment of both food and fluid intake should form part of a medical assessment and ongoing care of everyone, especially those with severe ME. Nutritional assessment must involve an ME-knowledgeable dietitian, preferably one who has experience of seeing people with ME. The patient's GP or specialist should discuss the the possibility of a referral to a dietician especially if admitted to hospital.
The assessment should involve:
- taking note of all the factors that increase the risk of malnutrition in vulnerable groups of people with chronic medical conditions. Physical factors include the loss of appetite, swallowing difficulties, nausea, and bowel symptoms that may affect both digestion and absorption of food. Social factors involve the ability to obtain food and prepare meals;
- recording the patient’s usual daily intake of food and fluid in terms of total calories, carbohydrates, proteins, fats, sugars, vitamins and minerals, and nutrients. Fluid intake should be in the region of five or more cups per day of water, juice, coffee, tea etc;
- noting physical signs of possible malnutrition which include recent weight loss, loss of hair, changes in facial features, including prominent cheekbones and sunken eyes, a red swollen tongue, which may add to swallowing problems, loss of skin elasticity when pinched, brittle nails and muscle wasting;
- using a validated screening tool such as the five-step Malnutrition Universal Screening Tool (MUST) and/or the Mini Nutritional Assessment (MNA), tools designed to record and monitor a person’s BMI (body mass index – the ratio of height to weight which identifies people who are overweight, normal weight or underweight) along with any recent weight loss. The scoring system identifies people who are at high, medium or low risk of malnutrition;
- doing a blood test to check for Vitamin D status in anyone who is housebound and who is not being exposed to sunlight;
- organising a nutritional care programme, supervised by a dietitian if a person has evidence of malnutrition or is identified as being at risk of developing malnutrition. This will include specific dietary advice regarding calorie intake, all the different food groups, along with vitamins, minerals and nutrients;
- involving the use of oral nutritional supplements in the form of powders and flavoured drinks used to increase the intake of specific food groups and calories, or to help with food intake where there are swallowing difficulties in people with severe ME;
- being cognisant that the effort required to buy food and prepare nutritious meals can mean that some people with ME find it difficult to maintain a healthy diet. This can be made harder by loss of appetite or food intolerance which may mean that the patient considers ready meals, community meal delivery services and taking vitamin/mineral supplements;
- suggesting smaller, more frequent meals that are easier to digest and maintain energy levels to patients who can swallow and digest food.
Enteral and parenteral feeding
Some patients with severe ME will require tube feeding, either enterally or parenterally. Please see 12-minute video by Helen Baxter who has drawn on the comparisons between the nutrition and care needs of the elderly and people with severe ME. The video entitled 'Preventing Avoidable Malnutrition in Severe ME' includes i
NICE guidelines 2021
There is only brief mention to malnutrition in the most recent NICE Guidelines, 2021, under 'Dietary Management and Strategies' at 1.17.11 and 1.17.12 as seen below.
1.17.11Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss because of:
poor appetite, for example linked with altered taste, smell and texture
difficulty swallowing and chewing.
Follow the recommendations on screening for malnutrition and indications for nutrition support, in the NICE guideline on nutrition support for adults.
1.17.12Give advice to support people with severe or very severe ME/CFS, which could include:
eating little and often
having nourishing drinks and snacks, including food fortification
finding easier ways of eating to conserve energy, such as food with softer textures
using modified eating aids, particularly if someone has difficulty chewing or swallowing
Home enteral nutrition service (HENS)
Questionnaires to evidence illness & severity when attending healthcare settings when malnutrition is an issue
The DePaul Symptom Questionnaire (DSQ-2)
DSQ-2 is a self-report assessment created by Leonard Jason at DePaul University, Chicago, Illinois, US. With 54 questions in total, the DSQ Symptom Questionnaire assesses key symptoms of ME such as post-exertional malaise, sleep, pain, neurological/cognitive impairments and autonomic, neuroendocrine and immune symptoms.
At each item, patients or carers have to rate the frequency and severity of the symptom on a scale from 0 to 4. You can put a score for how frequently you have each symptom and how severe it is. The questionnaire is based on research so useful to print out to complete and show to your GP/Consultant/other.
PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)
Bells Disability Scale
Alternative Severity Scale
t has a section on feeding, link here:
Tube Feeding Information
Screenshots of the relevant pages re Tube Feeding and the above linked Severity Scale from 'Severe ME/CFS: A Guide to Living’ by Emily Collingridge:
For details on how to order the book visit here.
The films could be used to educate medical staff as well as carers.
Information about consent to treatment includes a template statement and form as well as guidance notes, please see that information here.
More about severe ME & resources for patients & carers
What can be learned from five UK malnutrition case studies