Malnutrition in Severe Myalgic Encephalomyelitis (ME)

There is limited literature on the subject of malnutrition in Severe Myalgic Encephalomyelitis (ME). The 2007 NICE Guidelines (UK) make passing reference to the issue. There is also brief mention in the new 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.

Recent 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 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. 

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 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. 

Survey on Enteral and Parenteral Feeding

With the awareness of the difficulties people with very severe ME can have obtaining nutrition and hydration and the clinical response, the 25% ME Group devised a questionnaire for members who have experience of being enterally or parenterally fed. This is an excellent resource that describes how malnourished patients are wrongly diagnosed with psychiatric illnesses. 

The 25% ME Group, a national UK charity which supports and advocates for people with severe, and very severe ME, became aware of the significant clinical delays being experienced by patients requiring enteral or parenteral nutrition, and became concerned about the clinical responses, so wanted to collect data from charity members. 

An invitation to participate in the 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 study questionnaire recognised previously encountered difficulties experienced when researching severe ME. It considered the issues likely to prove a barrier to completing the document and tried to maximise participation, whilst reducing the risk of health deterioration.

The aims of the study were to explore whether, if the necessary support was provided and a modified extension to the usual timescale given, patients with very severe ME would be enabled to participate in research.

The Enteral and Parenteral Feeding Questionnaire by 25% ME Group in Appendix A below and within the 2022 paper outlining the difficulties for those with Severe and Very Severe ME in completing a survey on malnutrition, a survey entitled 'Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model, please see here

Sections of the Enteral and Parenteral Feeding Questionnaire 2019 by 25% ME Group

Survey Report 2021:  Helen Baxter, Nigel Speight and William Weir presented five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. 

This case study aims to alert healthcare professionals to these realities.

Please see Case Report here: Life-Threatening Malnutrition in Very Severe ME by Helen Baxter, Nigel Speight and William Weir.

Trigger Warning: Please be aware of upsetting content ahead

 

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 [7]).

 

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 Life-Threatening Malnutrition in Very Severe ME/CFS

How to Support Patients with Malnutrition Problems

• From the 25% ME Group at The Malnutrition Task Force Sharing Practice Day:

"Our advocacy worker, Helen Baxter, did a talk on preventing avoidable malnutrition in severe ME at The Malnutrition Task Force Sharing Practice Day. The Malnutrition Task Force focus on malnutrition in the elderly and Helen has drawn on the comparisons between the nutrition and care needs of the elderly and people with severe ME."

Please see 12 minute video entiltled Preventing Avoidable Malnutrition in Severe ME

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• Tube Feeding and Ability Scale from 'Severe ME/CFS A Guide to Living' by Emily Coleridge here 

Trigger Warning: Please be aware of upsetting content ahead

Personal Stories

Alice Barrett (UK) and Sami Berry (UK) are both suffering from severe ME. The two women are being treated in NHS hospitals. Their families feared that they are at risk of dying from

starvation. 

Alice, 25, 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.

The sister of Alice 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's story is told in the Times 26 February 2023, entitled ”ME patients ‘risk dying of starvation’ under NHS care”, thanks to the 25% ME Group for the copy.

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 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. 

Update

Thanks to the 25% ME Group, to Dr Nigel Speight, Dr William Weir, and Helen Baxter et al for your insights and guidance; and thank you to Alice and Sami for your personal stories. 

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