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Alexis___ME

Not medical advice or recommendations just things that I have found helpful.

Newest links

My letter in BMJ - Aug 2025 - Investment in care and clinical trials in long covid is an economic and moral imperative
CORE Sinai Manual on care in IACCs (ME, long covid etc)
amatica - cytokine testing in long covid
Bateman Horne Center resources and links in ME, long covid and IACC
Long Covid19 study - Gut microbiome test
Information on Ivabradine for POTS
Living with M.E.
Alexis on Bluesky
Donate to ME research by shopping on amazon UK (Affiliate link - I donate any earnings to ME research charities

ME explained

ME/CFS Healthcare Professionals
Text version of the above video - ME/CFS Scandal Explainer

Science of long covid

FUNCAP55 Functional Capacity tool
COVID-19 | UKHSA data dashboard (uk data)
2025 systematic review on prevalence of long covid
$1 trillion cost of long covid
UK statistics on long covid (last updated 2023)
Long covid review: 1 in 10 risk and 400 million people with long covid
Long Covid: Almost one in 10 may have condition, research finds

ME , LC & POTS health professionals

Dr Finlay's practice Long Covid clinic
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)

POTS diagnosis and management

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

ME/LC diagnosis and management

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

Advocacy and community support

Sign the Petition to Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark

Pacing and activity

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

Our voices as patients

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

Science & articles 🧬

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

Wearable tech and health monitoring

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)
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

Helpful things - 🇬🇧

Accessing LDN via LDN Research Trust -Dickson Chemist
FreshWipes™ | Biodegradable Body Wipes 15% off (via @abbiesendo)
Pluslife COVID at home NAAT test
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)
£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)

Helpful products (USA links 🇺🇸)

📖 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)
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)

Useful Apps

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

ME Association concerns

The sick times - Advocacy groups suspend ties with U.K. charity The ME Association over chairman’s op-ed - The Sick Times
Letter and Petition to ME Association
Questions and concerns for ME Association AGM
'Animals need to move' - article by the chairman of the ME Association

My writing and media appearances

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
Tiktok
 
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£6 gift voucher from tiktok when you join with this link (affiliate link - any commission earned will be donated to ME research charities)

Stuff I like:🌿📷📚🖥️🏔️

bookbub - free and cheap/deals on e-books
Lovely indoor nature - Yorkshire Bonsai trees
Soul Analyse | Positive Affirmation Jewellery

Money saving / free trials

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)
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)