People with difficult to diagnose and ‘psychologised’ illnesses such as ME/CFS understandably struggle to keep their hope (of recovery, of quality research, of support) alive. It’s particularly hard to do this when social media exposes you to multiple ‘bad news’ stories such as patients who are getting inadequate hospital care.
At the time of writing the UK community, in particular, is traumatised by the suffering experienced by Savannah. It also reminds us of previous patients in a similar situation in NHS hospitals such as the death of Maeve Boothy-O’Neill.
Dan Wyke (previously interviewed by us in 2025), a person-centred therapist, wrote some suggestions for the community on maintaining hope and building solidarity. He is, sadly, non-practising at the moment due to the severity of his health problems. He remains an active member of the MECFS community on X/Twitter and Bluesky and Facebook. Here he shares some ways to cope when the news about patient suffering and resistance to change by medical authorities is hard to bear.
Keeping Hope Alive – Dan Wyke
I despair of the dogmatism of the medical profession and the cruelty shown by so many members of the public. It’s a terrible burden for patients whose bodies are already broken. Given the seemingly implacable opposition people with ME face, it can be tempting to disengage.
If you’re struggling to keep hope alive, here are some simple actions you can take…
Donate to research
Many of the national charities have tax-efficient ways to donate (‘gift aid’ ensures that donations to UK charities from tax payers allow the charity to claim back any income tax paid on this money before it was donated). In the UK some research charities include:
- ‘PRIME’ research programme led by Professor Ponting at the University of Edinburgh
- ME Research UK
- Invest in ME Research
Donate to crowdfunding for patients in need
By following long-time members of the ME/CFS community online you may find campaigns for funding that chime with you and have the support of known good actors in our community. These are often ad-hoc campaigns to assist with moving house, living costs, medical fees and, sometimes, legal fees. It can be hard to work out which are genuine so proceed with caution and get to know the ME/CFS community online in order to judge for yourself.
Follow allies in the research and clinical community
Real hope lies in medical research, and the findings from research getting shared with clinicians. Clinicians and researchers into ME/CFS are often vocal on social media:
- sharing their research findings and insights
- supporting patient demands for more and better research
- demonstrating solidarity
- educating medics and other researchers
- debunking unscientific theories and claims
It can be heartening to follow them. Here are just a few suggestions for names to look for on any social media platforms you use:
- Todd Davenport
- Physios4ME and their founders
- David Tuller (public health journalist covering research into ME)
- Prof Chris Ponting
- Jaime Seltzer (scientific advisor to ME Action in the USA)
- Dr Binita Kane
- Dr Claire Taylor
- Bhupesh Prusty PhD
- Jack Hadfield of Amatica Health often posts ‘deep dive’ explanations of research papers that he’s been reading
- Joan Crawford, counselling psychologist working in the NHS
Links to their professional websites (or other sites where you can learn about their work) are listed above – you’ll need to search for them by name on any social media platforms you use in order to follow them.
Keep an eye out for other researchers and clinicians whose work is reposted by these individuals: you’ll soon have a good long list of people to follow who show solidarity with the ME/CFS community.
Write to your Member of Parliament about the cruelty, neglect and abuse
Write a short letter, politely explaining your concerns, but stressing their seriousness, and sharing some useful links with your MP. These could be links to newspaper articles about a particular case or a report by one of the charities that relates to your concern. Ask them to write to the relevant minister (eg health, research, etc) and pass on your concerns and to let you know of any reply. You could then forward that reply to one of the national charities for them to note for future reference – eg that a particular MP has been sympathetic and may be willing to support further actions in the future.
Make sure you write to your own MP by searching here using your postcode:
They Work For You (London Parliament)
They Work For You (Scottish Parliament)
They Work For You (Senedd/Welsh Parliament)
They Work For You (Northern Ireland Assembly)
Reach out to patients who are struggling
You can do this in a variety of ways. Even small gestures and actions can mean a lot.
Local groups (the ME Association keeps a list) often have friendly Facebook or other similar groups you can join. Share local knowledge (eg of good GPs, helpful clinics, services such as mobile hairdressers and other useful tips). You can chat in the group discussions, check in with people individually or share messages with the whole group. It can help others if you acknowledge the stress of hearing about awful cases in the news. Share some actions people can take if they are able to.
On social media you could direct message someone if they have ‘gone a bit quiet’ or seem low. Even if you can’t write much a quick ‘hello, just wondering how you’re doing?’ can mean a lot. Texting, direct messages on social media, etc are all excellent ‘asynchronous’ ways to communicate with other sick people – you write when you have a little energy, they reply when they have a little energy (no pressure to make or stick to a meeting or appointment time). Some people find moving images (gifs etc) or voice messages stressful – check first if you’re not sure.
Maybe you have a friend with the condition – a card in the post can be a meaningful and tangible reminder of your friendship and be a low energy way to offer them support.
Some of the helplines (eg run by the ME Association or Action for ME) often look for volunteers – if you have enough energy on a regular basis to commit to this.
Share easy-to-follow medical information with healthcare providers
Chances are a GP or other health care provider is at least as baffled and confused by your symptoms as you are. Given years of mixed messages (at best) GPs and other medics don’t have the general knowledge they need to recognise, support and manage patients with ME. Patients often report having to educate their doctors – many of whom are genuinely interested in latest research but just unable to keep up with all they need to know.
You can signpost them to:
- Free NHS training on MECFS, based on the NICE guidelines, developed as part of the governments MECFS Delivery Plan
- the 2021 NICE Guideline on ME/CFS which has recommendations on diagnosis and management of the condition based on latest research
- the ME Association website’s section on information for medical professionals – broad range of information on diagnosis, symptom management and more
- Physiotherapists could explore the book A Physiotherapist’s Guide to Understanding and Managing ME/CFS
Keep hope alive
Take heart from campaigners for social justice, like the late Rev. Jesse Jackson, who said that just by finding a way to “keep hope alive”, you are expressing a worthwhile sense of defiance.
Thank you for the photo at the top of this page – shared by Zoshua Colah on Unsplash
