Ensuring the voice of the very severely affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patient is heard in research-a research model, by Helen Baxter
Research article abstract:
Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics.
It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’
A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.
Conclusions:
Although patients with severe ME/CFS have often been excluded from previous research, due to being regarded as ‘hard to reach’, this study showed that if people with very severe ME/CFS are made aware that research is being undertaken, and the necessary support is provided, without time constraints, they can make invaluable contributions to research.
Recommendations to ensure high quality research in the form of a checklist for future researchers to follow:
- Utilise organisations, charities and support groups, both locally and nationally, who know the demographics of their patients, or members.
- Contact charities and other organisations to publicise an invitation to take part in research, both online and in print.
- Liaise with charities to find out when they send members printed documents, such as magazines, and place advertisements in these, allowing sufficient time for potential participants to see the advertisement and respond to it.
- When designing a survey, use simple language. Aim for a reading age of nine.
- Ensure software is used which has a ‘save’ function to enable participants to complete and return the document, as and when their health permits.
- Offer paper copies of surveys/questionnaires.
- Offer assistance to complete the survey/questionnaire by telephone and, if possible, by text.
- Look to recruit people with knowledge of severe ME/CFS to assist with completing documentation by telephone.
- Speak slowly and softly when talking to people with severe ME/CFS and avoid having them repeat themselves. Read the participants’ responses back to them for confirmation that they are correct.
- Make funders aware of the need for extended deadlines.
Article in Healthcare 2022, 10(7), 1278; [doi.org/10.3390/healthcare10071278]
Published: 10 July 2022 (This article belongs to the Collection Why Some Patients Never Fully Recover: Post Active Phase of Infection Syndromes (PAPIS))
It has been great to receive enquiries asking how people can donate money to WAMES.
16.8% of long COVID patients at a Japanese outpatient centre met the ME/CFS criteria, 51.1% were female. Main symptoms were fatigue and PEM, followed by headache and insomnia. To get a fuller picture symptoms would need to be tracked over a longer period of time and housebound patients included.
As you are aware, we have also established co-production meetings bringing together people with lived experience of a long-term conditions, health professionals, third sectors and organisations across Cardiff and Vale to work together to ensure we are meeting the populations needs. Representatives from The Welsh Association of ME & CFS Support have attended both events to date and we have really valued their insight and contribution to the meetings.
Help us to climb the first column to our fundraising target! Any help with raising funding and spreading the word would be welcome, but we would also like help with:
WAMES fundraising volunteers work from home with support from our Volunteering Coordinator and the Finance and Communications Teams. You decide the number of hours you can offer and all volunteers representing WAMES are covered by insurance. Want to know more?
During 2021 and early 2022 thousands of clinicians, patients and carers throughout the UK worked together to identify areas of ME/CFS that need to be researched. An ME/CFS Priority Setting Partnership (PSP) was set up to determine what should be prioritised.
“Now that we have the Top 10+, researchers, funders and government must work with people with ME/CFS to produce the highest quality research into these areas, and continue to prioritise ME”
How does this help WAMES?
Shop through Amazon’s charitable website and they will give 0.5% of the net purchase price to the charity of your choice. 
Our income has dwindled, so we won’t be able to pay our basic bills after this year.
Our volunteer Jacob spent the weekend setting up a new page and over the next month we will be learning how to use it.
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