Alexis___ME

Alexis___ME has been a member of Linktree for 3 years and joined in June 2023. The social media accounts linked to from Alexis___ME are: • Facebook • Instagram • TikTok • YouTube • Email • Substack • Bluesky Besides social media accounts, alexisme has populated their site with: • amatica - cytokine testing in long covid • CORE Sinai Manual on care in IACCs (ME, long covid etc) • My letter in BMJ - Aug 2025 - Investment in care and clinical trials in long covid is an economic and moral imperative • Bateman Horne Center resources and links in ME, long covid and IACC • ME/CFS Healthcare Professionals • COVID-19 | UKHSA data dashboard (uk data) • 2025 systematic review on prevalence of long covid • Long Covid: Almost one in 10 may have condition, research finds • UK statistics on long covid (last updated 2023) • $1 trillion cost of long covid • Long covid review: 1 in 10 risk and 400 million people with long covid • Information on Ivabradine for POTS • Sign the Petition to Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark • Alexis on Bluesky • UK - Charity provided Healthcare Services for M.E. - Action for ME • FUNCAP55 Functional Capacity tool • Living with M.E. • Good for random things you need in chronic illness like migraine caps - cheap but slow delivery: Temu new user- £100 money off vouchers and 30% off with code "afv67502" (affiliate link - any commission earned will be donated to ME research charities) • Questions and concerns for ME Association AGM • Letter and Petition to ME Association • The sick times - Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times • 'Animals need to move' - article by the chairman of the ME Association • Preworn | Pre-Loved Sustainable Second Hand Clothes • Long Covid19 study - Gut microbiome test • Text version of the above video - ME/CFS Scandal Explainer • ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) • Bed Phone Holder • Dr Finlay's practice Long Covid clinic • Donate to ME research by shopping on amazon UK (Affiliate link - I donate any earnings to ME research charities • What if • Dr Binita Kane - Long Covid Clinic (UK/international for advice only) • Dr Sanjay Gupta - Cardiologist and POTS specialist, York, NHS/Private/UK apps • Emily Cochrane - Clinical Exercise Physiologist who is excellent. Has ME herself and great at pacing and energy management advice. DOES NOT do GET/GRADED • Action for ME health services - but cannot prescribe • RTHM Direct - For some US states only (CA, CO, FL, IL, MD, MA, NY, NC, OH, OR, TX, VA, WA) • BMJ 2023 - Guide for Diagnosing and treating POTS for GPs • How to do a NASA Lan test to diagnose POTS • Diagnosis - PoTS UK • Managing PoTS - PoTS UK • POTS resources from Dr Sanjay Gupta, Cardiologist in York, UK • Bateman Horne Center - Info and guidance • What is ME? - World ME Alliance • Guide to care during 'crashes' (Bateman Horne) • Health rising website - lots of information and links • The home page for the following 3 links • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management Nov 2021 • TESTING RECOMMENDATIONS FOR SUSPECTED ME/CFS US ME/CFS Clinician Coalition Version 1 February, 2021 • ME/CFS TREATMENT RECOMMENDATIONS US ME/CFS Clinician Coalition Version 1 February 2021 • Long Covid Advocacy Shop - profits to Polybio and ME Research UK • UK NICE NHS Guidance on ME/CFS 2021 • Society of Occupational Medicine - Long COVID and Return to Work – What Works? • The ME Association guides • LDN Research Trust • Stop. Rest. Pace. • Any Rehab or activity needs to be carefully paced - never overexert or push through: Resources — Long COVID Physio • Ring Theory- lean in, dump out for support • Gez Mendinger - author of long covid handbook YouTube channel • Leeds doctor still 'bedbound' three years after Covid infection • Leeds long Covid sufferer's call for better support • The reality of long covid - my interview on BBC 2h22m in • @franhaddock - Why the world needs to wake up to post-viral disease| Mindless Mag • World Patient Safety Day letter 2024 • Actions for M.E - ME awareness day • Ed Yong - Fatigue Can Shatter A person - The Atlantic_July 2023.pdf • Ed Yong - [Audio] Fatigue Can Shatter A Person • Short films explaining ME/CFS • Nature Review article on long covid: 1 in 10 at risk • The Biology of ME CFS - a Neglected Disease • Long-term health impacts of COVID-19 among 242,712 adults in England • Burden of Long COVID higher than Cancer or heart disease - Nature Medicine • BMJ: Pathophysiology, diagnosis, and management of neuroinflammation in covid-19 • VISIBLE app for Long C and ME/CFS (apple and android)- Activity tracking for Long Covid and ME/CFS - I find this the most useful app • Welltory app - HRV, HR and symptom tracking - 30% off premium subscription - (NB I earn 10% commission) • £30 off Sensate VNS Device (please note I will receive commission for any sales too) • Kardia 6 lead ECG at home • Blood Pressure cuff - easy to use for sit/stand BP, all in one unit on the arm, syncs with phone (paid commission link) • £35 off Neurosym VNS • Accessing LDN via LDN Research Trust -Dickson Chemist • FreshWipes™ | Biodegradable Body Wipes 15% off (via @abbiesendo) • Pluslife COVID at home NAAT test • Migraine cap - can put in the fridge or microwave • Simba body pillow • 📖 Classical Pacing - A detailed guide to pacing and energy management (affiliate link - any commission earned will be donated to ME research charities) • 📖 The Long COVID Handbook by Gez Mendinger and Prof Danny Altmann (affiliate link - any commission earned will be donated to ME research charities) • Loop ear plugs - really quiet (affiliate link - any commission earned will be donated to ME research charities) • £3 off at The Face Mask Store | PPE Protection with FFP2/FFP3/N95/N99 masks • Pill Popper - handy for saving your fingers and hands from cuts and hard work (affiliate link - any commission earned will be donated to ME research charities) • Pill Box Organiser weekly - I have 8 of these so I can do 2 months at a time (affiliate link - any commission earned will be donated to ME research charities) • Small pill box - monthly - Good for evening and night medicines (affiliate link - any commission earned will be donated to ME research charities) • Tablet splitter (affiliate link - any commission earned will be donated to ME research charities) • HEPA Air filter I use - CONOPU 100㎡ - (quiet sleep mode) (affiliate link - any commission earned will be donated to ME research charities) • HEPA filter I use - EVA Alto one 30m2 (quiet sleep mode) (affiliate link - any commission earned will be donated to ME research charities) • PORTABLE HEPA Filter - PURE rechargable personal table top HEPA filter (affiliate link - any commission earned will be donated to ME research charities) • PORTABLE HEPA Filter - IMUNSEN with Cypress Wood, USB powered (affiliate link - any commission earned will be donated to ME research charities) • BIOVEA - a safe and reliable supplements supplier£10.00 off (>£50.00) (affiliate link - any commission earned will be donated to ME research charities) • PURE portable $40 rechargable personal table top HEPA filter ideal for car or dr appointments (affiliate link - any commission earned will be donated to ME research charities) • HEPA filter - PURE $80, 200sq ft (affiliate link - any commission earned will be donated to ME research charities) • PURE HEPA filter - $149 larger capacity for home (affiliate link - any commission earned will be donated to ME research charities) • Pharmacy2U | Online Pharmacy & Over the Counter Medicines (affiliate link - any commission earned will be donated to ME research charities) • Insight Timer (apple and android) -Free Meditation, sleep app, mindfulness and yoga Nidra (no movement) • Calm app (apple and android) let go (rain mix) sleep music - free trial on calm app • another symptoms tracking app - Guava (apple and android) An Easier Way to Manage Your Health • My letter to BMJ - There is an overlap between long covid and ME/CFS • My 2nd letter to the BMJ - We need better care for long covid and ME • £6 gift voucher from tiktok when you join with this link (affiliate link - any commission earned will be donated to ME research charities) • bookbub - free and cheap/deals on e-books • Lovely indoor nature - Yorkshire Bonsai trees • Soul Analyse | Positive Affirmation Jewellery • UK NHS Prepayment Certificate: Yearly £112 for as many as you need in 1 year - NHS website • FREE NHS PRESCRIPTIONS if you can't leave the house without assistance - NHS website • 20% off Lovely soft and warm bamboo socks and clothes (affiliate link - any commission earned will be donated to ME research charities) • Topcashback - £10 free Cashback (Free sign up), saves you on online shopping when click through it (affiliate link - any commission earned will be donated to ME research charities) • Another good Cashback site - £15 free when you open (free) account, a few % back on all your online shopping (affiliate link - any commission earned will be donated to ME research charities) • Audible Audio Books free trial (affiliate link - any commission earned will be donated to ME research charities) • Kindle Unlimited 30 day free trial (affiliate link - any commission earned will be donated to ME research charities) • Octopus Energy - £50 Cashback for switching (affiliate link - commission earned)