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We have noticed that we have many new followers in the last few months; you are all very welcome.
Some followers may
- be newly diagnosed
- have a diagnosis for some time
- suspect ME and haven’t received a diagnosis yet
- not have ruled out another condition
No matter what your background is we hope that we can help you in some way.
1. We are based in Ireland (Republic of Ireland). Please see the information and resources available via the link to our website. Information about PEM/PENE is particularly important, as it is the cardinal feature of ME.
Our website also provides detailed information on diagnosis and management, as well as extensive resources on severe ME, including guidance on caring for someone with severe, very severe, or profound ME. There are materials designed to help educate GPs and other healthcare professionals, practical tools for hospital or other care-setting admissions, information for carers regarding benefits, and guidance for individuals applying for welfare payments.
Many additional resources are available on our website, which is linked here:
2. Educational series of films, 'Dialogues' (UK), by Natalie Boulton and Josh Biggs, about ME and Severe ME via the link below. Films in the series which could be used alongside our own resources for self/others educational purposes include:
- Introduction to ME
- Understanding the atypical Post Exertional Response in ME (PEM/PENE)
- Activity & Energy Management - Pacing
- Severe & Very Severe ME
- Symptoms & Management of Very Severe ME
- Hospital Admission - issues & alternatives for severelyt ill patients
- Understanding the Harms of Graded Exercise (part 1 & 2)
- Patients Accounts of Key Symptoms
Other educational films in the series (re history, controversy & politics)
- Prologue: A dangerous model abandoned as NICE seeks to reform care for ME patients in 2021
- The Tangled Story of ME
3. Links to other informative pages
- The 'Stonebird' blog (Northern Ireland) by Greg Crowhurst is particularly focused on Severe/Very Severe ME and Caring for someone with Severe/Very Severe ME
- The Nightingale Continuum (Canada) is an excellent facebook page by Wendy Boutillier that provides a lot of information about ME, Severe ME as well as posts about the history, controversy and politics behind ME
- ME International (US) is another voluntary group that provides many resources for patients and carers.
