Essential Care Around Malnutrition in Severe Myalgic Encephalomyelitis (ME)

"This group of patients just don’t exist in the consciousness and experience of those from whom they need knowledgeable, guided & appropriate care." 

Malnutrition in Severe ME

One often overlooked but crucial issue that significantly impacts the lives of individuals with severe Myalgic Encephalomyelitis (ME) is malnutrition. Patients with very severe ME can experience difficulty maintaining their nutrition and hydration. In the most severe cases it is not uncommon. 

The most common reason for malnutrition in a severe ME patient is ME associated debility. There are a variety of other reasons which we will discuss below.

This post contains important and relevant information to be shared with patients' families and carers and more importantly with the doctors in a hospital where you or a person in your care is being refused treatment for malnutrition as a result of having severe ME, or where the patient is not being treated appropriately. 

The focus of this post is on overcoming the challenging aspect of accessing appropriate nutritional support for individuals with severe Myalgic Encephalomyelitis (ME). When we say 'severe' we refer to people with either severe, very severe or profoundly severe ME.

Some of the most severely affected ME patients experience serious difficulties in maintaining adequate nutrition and hydration and some will require feeding enterally.

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

Myalgic Encephalomyelitis (ME) is a WHO classified neurological disease with multi-system dysfunction which has a prevalence of 0.2–0.4% in the population. It is one of the most disabling diseases - the level of disability can exceed that in Polio, MS, advanced HIV, and other serious illnesses, including the effects of chemotherapy. It is a physical disease that, in its more severe forms, is severely to profoundly disabling. 

It is hard for anyone to understand the horrors of living with severe Myalgic Encephalomyelitis (ME). Finding a way to enable the ME - unaware person to get a glimpse of the conversation they need to enter into to learn about severe ME is vital, and it is very important to raise awareness and educate health professionals and society about this group of patients who just don’t exist in the consciousness and experience of those they need knowledgeable, guided & appropriate care from. 

Severe ME affects roughly 25% of people with ME. For those affected, simple tasks become challenges making daily life a constant struggle. People with severe Myalgic Encephalomyelitis require unique care due to the tendency for the illness to be exacerbated by everyday stimuli such as light, noise and even the slightest movement. Severe ME patients are housebound or confined to bed; some require tube feeding. 

Very severely affected patients experience profound weakness, constant pain, severe limitations to physical and mental activity, sensory hypersensitivity (light, touch, sound, smell, and certain foods), hypersensitivity to medications, paralysis and may more horrendously life limiting symptoms.

Very severe ME patients are often too ill to use a wheelchair or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration.  Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.  

For people with very severe ME 'resting' implies 'complete incapacitation’ which means that inactivity is the only option. Those severely ill are often incapacitated because it is physically impossible for them to do anything else.  Lying down in a dark room in silence and with absolute zero sensory input, with absolute zero physical movement or cognitive activity. Clothing and bed linen must be comfortable but sometimes no clothing is preferred and particular materials for bed linen essential. The room must have a very moderate temperature; not too hot or too cold.

Severe ME patients often cannot make doctor's surgery or hospital visits, and require in-home assistance and management plans specifically adjusted to their needs by a coordinated care team of providers. Carers, who provide ongoing management and the majority of care for patients, are subject to substantial stress and may need additional support. They require special attention, including in-home visits and phone/online check-ups, and a modified approach to management.

 

 

More about Severe ME  

 

Information that explains how Severe ME differs from less severe ranges: here 

 

Why does malnutrition occur in severe ME?

Malnutrition can occur in people with severe and very severe ME for a number of reasons:

• 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

• Researchers and survey coordinators need to examine how to engage patients who have been described as the ‘hidden patient population’, who have previously been largely excluded from research, due to the severity of their ME, patients who are often described as ‘hard to reach’;

• By making the necessary reasonable adjustments, such as direct outreach and giving the option to complete a questionnaire/survey/assessment by phone or text, very severely affected ME patients could be enabled to participate and provide invaluable contributions to research;

• The simplicity of any survey aimed at those with severe ME is critical, and would mean that all those who express interest would be able to complete a survey using the options available.

What doctors & other healthcare providers need to know

In order for doctors and other healthcare providers and hospital staff to manage severe ME they would be required to:

• 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

Primary care providers and other healthcare providers may not have seen patients with the level of severity of severe ME before. The extreme levels of energy limitations, cognitive impairment, pain, and sensory hypersensitivities may be surprising. At the same time, these patients and their caregivers may have been neglected or treated poorly by previous medical providers, they may have experienced gaslighting. As a result, they have had to become their own experts. A patient-centered, collaborative approach to care that is grounded in compassion and respect for the severe ME patient in all interactions will be of benefit to everyone. 

The following approaches can help:

• 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

  - There is limited literature on the subject of malnutrition in severe Myalgic Encephalomyelitis (ME) so 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. In the absence of accurate information about Severe ME, some physicians conclude a malnourished patient must have an eating disorder and, therefore, a psychiatric condition, leading to situations that are harmful and endanger the ME patient;

 - Delays in instigating tube feeding leads to severe malnutrition of a life-threatening degree. Cases highlighted in media involving two severe ME patients, Alice Barrett (UK) and Sami Berry (UK) who suffered difficulties with adequate nutrition, have shown that education among healthcare professionals and medical students about malnutrition is essential;

 - There can often be a significant delay in implementing tubefeeding due to professional differences of opinion, leading the patient to become severely malnourished; 

- Some of the most severely affected ME patients experience serious difficulties in maintaining adequate nutrition and hydration because of:

• 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

 

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 information from the ME Malnutrition Task Force via the 25% ME Group on how to support patients, see via link here.

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:

• restrictive diets

• poor appetite, for example linked with altered taste, smell and texture

• food intolerances

• nausea

• 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

• oral nutrition support and enteral feeding.

Home enteral nutrition service (HENS)

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. This service may not be available in every country. 

The HSE (Ireland) has a draft pdf HENS guide linked here.

Useful Resources

 

Questionnaires to evidence illness & severity when attending healthcare settings when malnutrition is an issue

 

The De Paul questionnaires linked below are researched based. When filled in and put into the patient’s medical file they will provide a record of symptoms and severities; completed questionnaires could indicate what medical staff haven’t had the knowledge to ask, and may give medical staff a better idea re what the patient is going experiencing when not being treated appropriately, or by being kept in hospital against their wishes. The patient’s illness can be reviewed regularly using the same questionnaires.

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.

As much as anything the questionnaire can teach the GP what ME is. 

The completed questionnaire could be included in the patient's medical file. 

 

DSQ2 symptom questionnaire: 

https://www.researchgate.net/publication/358282115_DePaul_Symptom_Questionnaire_2_DSQ_2

 

 

 

PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)

Post Exertional Neuroimmune Exhaustion (PENE), the post exertion response following any activity whether physical or mental, is a key feature of Myalgic Encephalomyelitis (ME) and an essential criterion for an ME diagnosis. PENE is referred to as PEM by others.

 
By answering the questions, the patient and health professionals get an idea of how ‘activity’, anything the 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 completed questionnaire could be included in the patient's medical file. Perhaps a family member/carer/other could complete it on behalf of the patient.

De Paul Post Exertional Questionnaire:

http://www.researchgate.net/publication/358282034_The_DePaul_Post_Exertional_Malaise_Questionnaire_DPEMQ

 

 

Bells Disability Scale

 
We tend to refer to the different severities of ME as Mild, Moderate, Severe, Very Severe, Profound - we refer to those as general categories which really have ranges within themselves i.e., Mild has its own range, as does Moderate and so on.
A good scale that could be used along with these categories to determine near exact range is the Bells Disability Scale for example, see link below. Different people suffer in different ways but the scale gives an idea of the level of disability.

 

•           It can be used by both Patient and Doctor to monitor progress/relapses of ME over time. It could be included in the patient's medical file.
 

•           Tick which descriptor best describes you today.

 

 

Bells Disability Scale: 

https://drive.google.com/file/d/1Vo0wFtuXkb5iSNYX4Z2qMV_mKa5R_X2M/view

 

 

 

 

 

Alternative Severity Scale 

 

'Severe ME/CFS - A Guide to Living with ME' by Emily Colingridge (published by Action for ME) has a downloadable 0-100% severity scale; it is easy to show to medical staff and point to the lower end to give a context for severity, and can also be kept in the patient's medical file. It has a section on feeding, link here:  

https://www.actionforme.org.uk/uploads/pdfs/functional-ability-scale.pdf

 

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: 

https://drive.google.com/file/d/1iNQ-70Sz2gxsoUz3LyWaUeg0oBum6jGC/view?usp=sharing

 

For details on how to order the book visit here. 

Educational Films  

In the 'Dialogues of a Forgotten Illness' series on severe and very severe ME, Dr Nigel Speight discusses 'the need for a particular type of GP that harkens back to days long gone', and emphasises that people with severe and very severe ME need GPs who can make house calls and coordinate among the various specialists involved with a complex patient, that we also need GPs who understand the emotional experience of severely ill patients and how isolation, neglect, abuse, poverty, gaslighting, and medical trauma take their toll on well-being. 

 

 

Severe & Very Severe ME 
 

Please see 'Dialogues For a Forgotten Illness' films about Severe ME via this link:  

Severe & Very Severe ME / CFS - Dialogues (dialogues-mecfs.co.uk) 

The films could be used to educate medical staff as well as carers.

 

Hospital Admission 

 

Dialogues For a Forgotten Illness must-see short film for all medics and especially for those who have patients at the more severe end of the spectrum of ME. A must see for physicians accepting the responsibility for these patients and a must see for carers confronting the decision as to whether the patient in their care needs to go to hospital and, if so, how best to manage it.

It is hoped that this film will challenge professional’s practice, attitudes, and beliefs about people with Very Severe/Profound ME who are suffering unimaginably with little recognition or helpful input.

See third film ‘Hospital Admission’ via link: 

Severe & Very Severe ME / CFS - Dialogues (dialogues-mecfs.co.uk)

 

Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay

Here are a few questions set by US advocacy group ME International you may consider asking a hospital or doctor’s office in order to avoid a possible psych referral/ward stay, or to have ready as a response if your doctor during a hospital stay refers you to a  psych medic. These questions are based on a letter originally used by prof. Steven Lubet (school of Law, US) in a letter to Hennepin Healthcare:

Does [Institution Name] have written guideline, procedures, or protocols regarding the referral of patients for involuntary psychiatric commitment?  If so, kindly provide me with a copy, or direct me to a website where they are accessible. 

 

Have any [Institution Name] physicians or other professionals participated, within the past five years, in CME courses or in-service training regarding ME?  If so, kindly provide me with any materials for such CME or training or direct me to a website where information is available. 

 

​Are there any physicians or other professionals on staff at [Institution Name] who specialize in ME?  If so, kindly provide me with their names and contact information.

Here is Prof Lubet’s letter to Hennepin Healthcare as relayed by David Tuller via Virology Blog: Trial By Error: Professor Lubet's Inquiry to Medical Center Holding ME/CFS Patient | Virology Blog

Gurney transportation

The level of disability that requires gurney transportation for someone with severe or very severe ME and/or structural issues usually comes with extreme suffering. The inability to sit up accompanies a myriad of symptoms ranging from brain inflammation to unrelenting pain throughout the body. 

 

Finding non-urgent transportation on a gurney (or stretcher) for a bed-bound person is not just challenging, sometimes it seems impossible.

 

Gurney guide: -https://www.galenwarden.com/post/gurney-guide

 

Hospital admission resources 

   

Resources for hospital admission from ME Advocates Ireland (MEAI) including a Template Care Plan, Emergency Room Info Sheet, Anesthesia Info for ME Patient, Consent to Treatment Statement: ME Advocates Ireland (MEAI): Resources for Hospital Admission/Care Setting for People with ME - Personal Care Plan etc

 

 

Consent to Treatment Statement   

 

Information about consent to treatment includes a template statement and form as well as guidance notes, please see that information here.

"Clinical investigation of gastrointestinal impairments in ME patients, with an emphasis on neuro- and immuno-gastroenterology, is needed to understand the causes of malnutrition in Severe ME." 

~ 25% ME Group~

Support

25% ME Group 

The 25% ME Group exists to support all who have the severe form of ME and those who care for them. This includes people who are housebound, confined to bed and wheelchair users.

At present there is no other organisation concerned specifically with the needs of the severely affected in the UK or in Ireland although we at ME Advocates Ireland (MEAI) share information, educate, and support severe ME patients.

The 25% ME Group highlight the significant clinical delays being experienced by patients requiring enteral or parenteral nutrition as well as concerns about the clinical responses, and collected data from charity members in order to evidence the difficulties and bring them to the attention of medical practitioners and others. 

The 25% ME Group is campaigning for better care to prevent malnutrition in people with Severe ME. The #EndMalnutritioninME campaign has a Twitter account, follow them at @MalnutritionME 

25% ME Group website here.

Contact 25% ME Group:

Phone: 01292 318611

Email: enquiry@25megroup.org

Address: 25% ME GROUP. PO BOX 8620, TROON. KA10 9BL

Further Information

More about severe ME & resources for patients & carers

 - Managing severe Myalgic Encephalomyelitis, information by ME Advocates ireland (MEAI) here.

 - Resources for patients and their carers for hospital or other care setting here 

 - Information for doctors and other healthcare providers by ME Advocates Ireland (MEAI) here 

 - Information for caregivers of someone with severe ME by ME Advocates Ireland (MEAI) here 

 - Support for caregivers by ME Advocates Ireland (MEAI) here 

 - Sample eating guides for puréed food here and here

What can be learned from five UK malnutrition case studies  

(Content Warning: some aspects of the paper and the detailed cases may be upsetting)

In each of the five cases detailed in a study entitled 'Life Threatening Malnutrition in Severe ME', by Helen Baxter, Nigel Speight and William Weir patients with Severe ME who were unable to take in adequate nutrition orally were refused tube feeding by doctors who did not believe that the patients were as sick as they or their family said they were. The horrendous experiences of all five cases share some remarkably similar features. 

Despite very low body mass indexes and high Malnutrition Universal Screening Tool (MUST) scores, when admitted to hospital, all five cases suffered significant delays in nutritional intervention. 

Clinicians only intervened, when the malnutrition and dehydration became life-threatening. 

The primary clinical need was neglected in favour of psychiatric intervention and all of the five cases were deemed, incorrectly, to be suffering from anorexia nervosa. 

Their dysphagia was also felt to be a psychological manifestation. The clinicians involved appeared unaware that severe ME can lead to difficulties maintaining nutrition and fluid requirements. 

All five severe ME patients had been allowed to become and remain severely malnourished and dehydrated.

Failure to recognise this resulted in clinical inertia and put the patients at risk of diseases related to malnutrition, and of refeeding syndrome when intervention finally occurred.  

Please see the 2021 paper detailing the five cases here for more information and to learn from those cases.

Details re Case 1 from the above linked study:

'This patient was diagnosed with severe ME as a child and has never fully recovered. She has been very severely affected for the past nine years. She has received care in a nursing home setting, hospital and now in her forties has around the clock care in the community.

 

Her difficulty swallowing started in 2015 whilst a resident in a nursing home. A speech and language therapist (SALT) diagnosed dysphagia, cause unspecified. A community dietitian visited and prescribed oral nutritional supplements (ONS). The patient was unable to tolerate these and became increasingly malnourished.

 

Although she was already significantly underweight, the primary health care team failed to recognize the severity of the situation. Over a seven week period she was almost completely unable to ingest any nutrition or hydration. As the situation deteriorated the patient was told that she would be sectioned under the Mental Health Act if she did not go to hospital. She reluctantly agreed to a voluntary admission.

 

Over a two week period in hospital she was intermittently given intravenous fluids, but no nutrition. She was screened using the malnutrition universal screening tool (MUST); her MUST score was 4 (2 or above denotes high risk of malnutrition).

 

Her condition deteriorated further to the extent that she had to be admitted to a High Dependency Unit (HDU) because no Intensive Care Unit (ICU) bed was available, after which a Nasogastric Tube (NGT) was inserted. By this time, she was found to be suffering from a severe electrolyte imbalance, which further delayed the establishment of a feeding regime due to the risk of re-feeding syndrome.

 

Two months later with an established NGT feeding regime in place her MUST was still only 2.

The patient gained the strong impression that her doctors regarded her problems as psychological in origin and that she was being treated as if she was suffering from an eating disorder.

An NGT was sited prior to discharge. The patient was told another NGT would not be sited.

 

The tube remained in situ far longer than recommended until it became unusable. It was re-sited as an emergency in hospital. Subsequently the tube became blocked on several occasions and each time the patient had to attend the hospital as an emergency to have it replaced. This was especially concerning as there was no guarantee the tube would be re-sited, despite a clinical need.

 

In 2019 this situation improved after a Percutaneous Endoscopic Gastrostomy (PEG) was sited, and finally the patient had an improvement in her quality of life with the allocation of a Home Enteral Nutrition Service (HENS) dietician who made changes to the feed to ameliorate pain whilst being fed.

 

The patient still feels that there has been a failure to acknowledge her dysphagia. Today she has a normal BMI and continues to receive her preferred choice of care in the community.'

 

 - from the 2021 paper entitled 'Life-Threatening Malnutrition in Very Severe ME/CFS'

Problems reaching severe ME patients for inclusion in research 

The difficulties for researchers to reach those with severe ME to include them in research and the problems experienced by severe ME patients responding to surveys and completing a survey such as one on malnutrition, and the methods of collecting data from patients with severe ME, and the process of achieving this, is outlined in a paper entitled 'Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model' by Helen Baxter which aims to act as a model for future researchers. See the paper here.

With the awareness of the difficulties people with very severe ME can have obtaining nutrition and hydration and the clinical response by medical professionals, the 25% ME Group devised a survey for members who have experience of being enterally or parenterally fed to gather data about their experiences of accessing tube feeding. In June 2019, an invitation was placed in the 25% ME Group charity’s newsletter, ‘The Quarterly’, inviting members who met the criteria to complete the questionnaire.

By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by phone or text, very severely affected ME patients were enabled to participate and provided invaluable contributions. The simplicity of the survey meant that all those who initially expressed interest were able to complete it using the options available.

This survey coordinators examined how to engage patients who have been described as the ‘hidden patient population’, who have previously been largely excluded from research, due to the severity of their ME and are often described as ‘hard to reach’. 

Please see the questions raised in the survey below.

ENTERAL AND PARENTERAL FEEDING QUESTIONNAIRE

Are You: [Circle all that apply] NG Fed go to Section 1 NJ Fed go to Section 2 PEG Fed go to Section 3 PEJ Fed go to Section 4 On TPN go to Section 5 Everyone needs to complete Section 6

Section 1 NG Fed members only

Age How long did you have ME before being NG fed? Reasons for NG Feeding How long have you been NG fed? Hospital Consultant Gastroenterologist Who manages your tube on a daily basis i.e., flushing/ aspirating? Who oversees the care of the tube and your nutrition in the community When the tube needs replacing where does this take place? Is there a plan in place for the replacement e.g. elective resiting?

Section 2 NJ Fed members only

Age How long did you have ME before being NJ fed? Reasons for NJ Feeding How long have you been NJ fed? Hospital Consultant Gastroenterologist Who manages your tube on a daily basis e.g. flushing? Who oversees the care of the tube and your nutrition in the community? When the tube needs replacing where does this take place? Is there a plan in place for the replacement e.g. elective re-siting? Are you NJ fed due to gastroparesis? Have you been tested for / diagnosed with Mast Cell Activation Disorder? If "YES" to the above, circle as appropriate Section 3 PEG Fed members only Age Hospital Consultant Gastroenterologist How long did you have ME for before any form of tube feeding commenced? How long did you have ME before being PEG fed? Were you NG fed before being PEG fed? If so, why was the decision made to site a PEG? Reasons for PEG Feeding How long have you been PEG fed? Who manages your tube on a daily basis e.g. flushing/aspirating? Who oversees the care of the tube and your nutrition in the community? Section 4 PEJ Fed members only Age Hospital Consultant Gastroenterologist How long did you have ME for before any form of tube feeding commenced? How long have you been PEJ fed? What other forms of tube feeding were tried prior to PEJ feeding? Why and by whom was it decided you needed a PEJ? Who manages your tube on a daily basis e.g. flushing? Who oversees the care of the tube and your nutrition in the community? Are you PEJ fed due to gastrointestinal failure? Have you been tested for/diagnosed with Mast Cell Activation Disorder? If ‘YES’ to the above, circle as appropriate Section 5 Total Parenteral Nutrition Age Hospital Consultant Gastroenterologist How long did you have ME for before any form of tube feeding commenced? How long have you been on TPN? What other forms of tube feeding were tried prior to TPN? How long were they tried for and why were they stopped? Were you allowed to become underweight whilst different types of tube feeding were tried? Who manages your central line on a daily basis? Are you on TPN due to gastrointestinal failure? Have you been tested for / diagnosed with Mast Cell Activation Disorder? If "YES” to the above, circle as appropriate Section 6 All enteral/parenteral fed members Have you been assessed by SALT? Were you diagnosed with an unsafe swallow? Were you allowed to become underweight prior to tube feeding commencing? Was your inability to eat ever considered to be anorexia nervosa? Were you ever threatened with sectioning prior to tube feeding commencing? Do you feel your health has improved by being tube fed? Any other relevant information:

Background to the enteral and parenteral feeding questionnaire

An invitation to participate in the above survey was placed in the 25% ME Group charity’s newsletter, ‘The Quarterly’, in summer 2019. This was available either on paper, by post or via email. The questionnaire contained a range of questions such as age, reason for Artificial Nutrition (AN), type of AN, duration and an open-ended section for noting ‘any other relevant information.’

The questionnaire coordinators recognised previously encountered difficulties experienced when researching severe ME. They considered the issues likely to prove a barrier to completing the Malnutrition document and tried to maximise participation, whilst reducing the risk of health deterioration. They explored possibilities essential support being provided and modified extension to the usual timescale given so that patients with very severe ME would be enabled to participate in the research.

The results following feedback collation from the questionnaires is an excellent resource that describes how malnourished patients are wrongly diagnosed with psychiatric illnesses, see that paper again entitled 'Life Threatening Malnutrition in Severe ME' here. (Content Warning: some aspects of the paper and the detailed cases may be upsetting)

Personal Stories

Cases highlighted in media involving severe ME patients in the UK, Maeve Boothby, Alice Barrett, Sami Berry, and Merryn Crofts who all suffered or continue to suffer difficulties with adequate nutrition, have shown that in the absence of accurate information about very severe ME, some physicians conclude a malnourished patient must have an eating disorder and, therefore, a psychiatric condition, leading to situations that are harmful and endanger the ME patient. Delays in instigating tube feeding leads to severe malnutrition of a life-threatening degree. 

Maeve Boothby

Maeve Boothby, a young woman who suffered from severe ME and became unable to swallow food, died in 2021 at age 27, after doctors at the Royal Devon and Exeter Hospital repeatedly refused to allow her to be tube fed, despite pleas from her family. An inquest is investigating the cause of Maeve's death; it’s expected that the inquest will find that malnutrition was a contributing factor. More about Maeve here and here.

Maeve’s father Sean O’Neill, a journalist at The Times, brought widespread attention to ME in a series of articles, including an article last year about Maeve. His “creative, courageous” daughter, wrote O’Neill, “struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.”

The NICE guideline on ME was updated shortly after Maeve's death. The new guidelines, i.e., NICE guideline [ng206], make it clear that people with severe ME become so debilitated that they are unable to take nutrition orally, and that in such cases tube feeding is appropriate. 

According to patients in the UK, the NHS has made no effort to inform doctors of the new guidelines, and it seems that the new guidelines have had little effect on clinical practice.

Alice Barrett

Alice has severe Myalgic Encephalomyelitis (ME) and is being cared for by Royal Devon University Healthcare NHS Foundation Trust. 

Doctors were ignoring advice from family and ME experts on how best to treat her. The family feared that Alice would die and that they haven’t got much time at all to do something for her, she needs to be fed via a tube, The hospital had said it is NHS policy that she must be inclined at 30 degrees for this to happen. However, her condition means she cannot tolerate being anything other than horizontal.The family said it is the latest example of doctors at the trust failing to understand the extent of Alice's illness and insisting on actions that make things worse.

Alice's sister was interviewed by BBC South West about Alice’s need to be urgently tube fed lying flat. ME knowledgeable doctor and medical advisor, Dr Weir also features on the interview. 

You can watch the interview here thanks to the 25% ME Group (UK).

Alice was unable to lie at 30 degrees to be tube fed in line with hospital policy. The hospital have now amended Alice’s tube feeding plan to factor this in, more here.

Sami Berry

Sami Berry's story is told in the Times 26 February 2023, entitled ”ME patients ‘risk dying of starvation’ under NHS care” here, thanks to the 25% ME Group.

Merryn Crofts

Merryn's sister Amy described the final three years of her life as horrendous saying that Merryn's hospice doctor likened it to having 'a heart attack in your stomach'. She added that the best advice the family got was from a doctor who told Merryn to do only 50% of whatever she felt she could do, so that she always had energy in reserve, but in her final years Merryn had no energy in reserve, she was always borrowing from the following day. 

More about Merryn in our post in her memory here

Final thoughts

To the HSE,

We ask you to consider the needs of those very severely affected by Myalgic Encephalomyelitis (ME) when writing clinical guidelines for ME.

We ask you to adopt and give a directive to all HSE staff to read and learn from a concise clinical guideline about severe ME especially for general practice doctors and hospital staff who have no experience working with ME patients and severe ME patients. Ideally, this document would discuss the unique medical conditions common to people with very severe ME. 

We ask you for a document that provides a differential diagnosis plan for ME patients experiencing malnutrition to be included in clinical guidelines on ME. Some likely offenders driving weight loss, food intolerances, and GI dysfunction include gastroparesis, mast cell disease, delayed motility in the small intestine, malabsorption, abdominal vascular compression syndromes, SIBO, etc, are poorly understood conditions that require specialized diagnostic tests and treatments. 

We ask the HSE to ensure that all health/social/community care providers be 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. We highlight the need for creative and pragmatic approaches to reach such individuals.

To caregivers,

We ask caregivers in the home, or caregivers and staff in a nursing home, or other care facility, to be creative and pragmatic in your approaches to nutrition for individuals with severe ME who have specific nutritional needs, especially for those who find it difficult to eat, who have swallowing issues and severe gastrointestinal problems in tolerating food. It is important to be patient and to provide variety and be prepared to let the patient try and test alternative foods as well as experiment with puréed foods that are moist, smooth, and cohesive with no water separation, e.g., the texture of soups or mousse, not lumpy or too runny. Some patients may only be able to tolerate very thin puréed food. Patients may need to try foods over time to find what they can tolerate. 

Any meaningful advocacy on the topic of malnutrition will require the input of many people, including patients, physicians, family members, caregivers, and advocates.

In the absence of accurate information and knowledge about severe ME, many physicians conclude a malnourished patient must have an eating disorder and, therefore, a psychiatric condition. 

We need to change this narrative.

We need to stop  trivializing those severely affected with ME, to stop offering lifestyle suggestions and recommending therapy. 

Thanks to the 25% ME Group, to Dr Nigel Speight, Dr William Weir, and Helen Baxter for your insights and guidance.

Thank you to the families of Maeve, Alice, Sami and Merryn for your invaluable personal stories, thank you all.

 Thanks also to Jose G. Montoya et al for information from a section of a 2021 paper entitled 'Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'  on which we based some of our information above.

Remembering Merryn Crofts whose life was cut short on May 23rd 2017

 Remembering Maeve Boothby O' Neil whose life was cut short on Oct 3rd 2021 

Remembering all ME patients whose lives were cut short 

due to lack of knowledge around severe ME 

specifically around life saving nutritional needs

Updates

Recent Personal Stories Concerning Malnutrition & Harms in Hospitals (UK) February 2024 (Content Warning - content may be difficult to read and listen to)

In February 2024 we became aware of two severe ME patients being harmed by the medical system in the UK. The two severe ME patients are not being treated in accordance with advice re malnutrition & tube feeding in Severe ME. They are being gaslit and abused by doctors and are at risk of death if they do not receive appropriate care.

Millie’s story is shocking.

Millie needs a feeding tube; she had to go into hospital to have one put in or she would have starved to death. The family was hoping it would be a quick visit but medical professionals appear to be ignoring official guidelines into the disease and going so far as to section her under the Mental Health Act, and limiting her mother’s visiting rights.

The doctors told Millie’s parents that they don’t believe ME is a real illness and think she has an eating disorder. There is a petition people can sign calling on the NHS to act. The introduction in the petition tells us about Millie's situation; you can read the introduction and sign the petition here.

Karen’s story is also shocking

Karen is currently at home suffering from life threatening dehydration and malnutrition. She has lost a lot of weight and is getting thinner and thinner. Karen is scared that she is going to die from dehydration and malnutrition.

Karen needs the East Sussex Healthcare NHS Trust to provide I/V feeding (TPN) and I/V fluid at home without delay. Like most with severe ME Karen cannot tolerate a hospital setting; she needs to have TPN and IV fluids setup at home because she cannot tolerate a hospital visit especially when they likely do not believe in her illness. Please read about Karen and sign the following petition to support Karen here

March 2024

One of the young women we have referred to above, Millie McAinsh (UK) who lives with severe ME, is being dangerously neglected by an NHS hospital despite interventions, media coverage, a petition, and social media uproar. The situation is such that her family has told the Canary they are concerned she is “declining daily” and that the situation is “heartbreaking”, here

"A Rollercoaster Of Awful Emotions’: Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients" Millie McAinsh’s family (UK) sought help when the ME sufferer could no longer eat – only for her to to be sectioned, piece by Laura Elliott 19 March 2024 here

Update about Millie from her family, 18th March 2024

"Millie received an official ME diagnosis - on 15/03/24 Dr Weir sent a very clear letter to the hospital stating that Millie’s diagnoses is ME and for this to be added to her medical records. For over a week now Millie has been telling us and the hospital that she feels her body is shutting down and that she is dying. Millie doesn't have the energy to verbalise due to her very severe ME and in hospital has only cried out in words when under extreme distress.

On Friday 08/03/24 afternoon Millie verbally stated to her sister that she is going to die and needs to go home. An NJ tube is planned for Wednesday 20/03/24 and a best interests meeting is on Tuesday 19th to decide if this will go ahead.

We believe NJ feeding tubes can be used in the community here but are not 100% certain. However Millie has stated over the last few days that she feels, as they have made her wait so long, that she is too ill to have the NJ tube and feels she will die before having it.

Leeds and Sheffield Hospital ME/CFS departments have been contacted by the hospital however from our research we believe that their main focus is behavioural and psychological instead of the very real and physical illness and symptoms ME presents."

“There is no in-patient provision anywhere within the NHS for anyone with severe or very severe ME; …… this must be tackled at the very highest level.”

In February 2024 Channel 4 News highlighted Merryn Crofts and Maeve Boothby O’ Neill’s stories of horrendous treatment by NHS in similar cases to Karens and Millies. Our sincere thanks to Clare Norton & Sean O’ Neill for highlighting the lack of medical care for severe ME patients and for talking about UK NHS healthcare’s refusal of appropriate care for their daughters, for raising awareness amongst health professionals and society about this group who just don’t exist in the consciousness & experience of those they need knowledgeable, guided & appropriate care from.

Content Warning - this may be a difficult watch: Channel 4 News piece here

This is not just an issue in the UK but also in Ireland and worldwide where there are difficult hospital admissions, neglect, stigmatisation, disbelief, resulting in death in Severe ME cases.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance through other avenues, depending on your query or need for support, for example, your doctor(s), via Citizens Information, Your Local HSE Office, Revenue or other.