Toolkit
LCA aims to make life easier for those with Long Covid & ME/CFS by providing ready-made tools. We have letter templates, leaflets for friends & family, HCPs & patients, printables, stickers, the latest research & even materials to start a community public messaging campaign. Handy links to support, community, & connection are all below.
You can find a summary of our FREE DOWNLOADS HERE.
Non-obligatory button to make a donation to support our work.
Medical Binder
We have designed a flexible, multi-use medical binder to make managing your health needs a lot easier! This can help make medical appointments smoother for patients. A life saver if one has PEM &/or cognitive dysfunction.
FREE PDF printable download
PDF download ready to print & fill in so you can make your own binder.
Ready-made professional printed physical binder
Need a pro physical copy? No problem, we have an easy hack to print your folder at Dox Direct with a ring binder, tabs and high-quality paper, all included. (no affiliation). We have made a VIDEO to show you how to do this. We've even designed a free cover for you to look really pro.
All of our folders include these sections:
Appointment Details - Covid Infection History - Symptom Tracker - Vaccination History - Supplement Tracker - Food Intolerances - Medical Budget - Symptom Summary - Medication Tracker - Period Tracker - Wear a Mask Request - About Me - Medical History - Treatment Summary - Appointment Summary - Testing Summary - Possible Testing - Family Medical History - Functional Capacity - Aides - Impact - Healthcare Providers - Note space
Reinfection
Covid Reinfection Protocol - RIVER
Reinfection carries a significant risk for many. 80% of people with Long Covid deteriorate. One of the most important things to do is REST. That means being prepared. To help you, we have devised a REINFECTION PROTOCOL - RIVER - Rest, Isolate, Ventilate, Emergency Box, Reduce viral Load - for more details press the button below!
One or more members of a family might need to isolate, so we also have ideas for you to create 2 superhero boxes: the X-Men Box (if you are isolating with someone or have access to all facilities) and the Wonder Woman/Man Box, if you need to be ready to isolate solo.
We keep up to date with the latest research to keep abreast of what can lower risk.
Ventilation
Prevention & stopping reinfection is key for us all. We have ready-to-go letter templates that you can edit for your school & workplace to advocate for safe conditions. Available as a downloadable PDF or digital google doc (in link) with instructions on how to personalise.
Open Letter by Prof Adam Squires
Clean Air in Classrooms Leaflet by Clean Air Classrooms, Brooker & Pearson
Guerrilla Marketing
There is little official public health messaging about Long Covid. We aim to change that by providing resources, some free to download & print & easy ready-mades in our shop. Spread the word in style with our clothing range, mugs, t-shirts & hoodies. All profits go to research. For more details, see our SHOP for merch or Etsy Shop for the medical folder.
Free Downloads - Infographics/Leaflets/Letters/Stickers
Information brochures for patients/ HCPs/ family & friends
digital downloads or ready-to-buy (nearly ready!)
Exercise
People with ME/CFS & Long Covid are often prescribed exercise or activity to aid recovery. We know this can be harmful. Here is an academic reference list & ready to go letter. These demonstrate the research that proves the harms of exercising & activity that you can give to your health care provider. Download a PDF or click link for digital google doc.
PEM
Post Exertional Malaise is a predominant experience in ME/CFS & Long Covid. PEM or PESE means that over-exertion is detrimental.
Yet it is not well known in the medical profession. Here is a letter & scientific references you can show to your HCP. Available as a PDF or digital google doc (in link).
Extra Tools
Resources from the community
There is a plethora of help from other organisations & charities - here are some of the best:
Mount Sinai, Cohen CORE Centre Infection-Associated Chronic Illnesses Provider Manual
2021 NICE Guidelines for ME/CFS
Dr Weir's Synopsis of the Pathophysiology of Severe ME Leaflet
ME Action Pacing Guides - Adult, Paediatric & Clinician
Find a Clinician Global Directory from ME Action
Mast Cell Action Self Management Guides
SOM Long Covid & Return to Work
BASW Practice Guide for Social Workers of FII
My Long Covid Needs by Asthma + Lung UK
ACAS - workplace rights & advice
Disability Rights UK - (includes PIP advice)
Connect
You are not the only one
Long Covid & ME can be isolating illnesses. One way to stay in touch can be social media. We have compiled some lists on Twitter so you can find a quick way into the community. Here are some handy links for Twitter & Facebook:
Long Covid Patient Experts ME/CFS Patient Experts
Long Covid Research ME/CFS Research
Covid & Long Covd Experts Mastodon LC/ME
Ventilation & Filtration ME/CFS Accounts
Handy Hashtags
#LongCovid #LC #FBLC #MECFS #CleanAir #COVIDisAirborne #CovidIsNotOver #Ventilation
The Long Covid Support Facebook group has over 60K members. It's a great place to connect & find others with Long Covid
Support
A bit of extra help
Sometimes we or our loved ones need some extra support. There are some excellent resources run by various organisations:
Action for ME
Information & Support Service - 0117 927 9551
ME Association
ME Connect - 0344 576 5326
Bateman Horne
Carers UK
Contact & Helpline 0808 808 7777
Samaritans
Citizens Advice Bureau
Disability Rights UK
Rights
©Long Covid Advocacy2024
Long Covid Advocacy allows free distribution of any free download for personal use.
Any free download may be used by an individual - if a charity or organisation wishes to use our work, designs or documents permission MUST be asked for.
We maintain copyright & restrict free distribution of any product, design or document for sale. Please note that a lot of work has gone into these projects & we have produced them to support LCA & to raise money for biomedical research into Long Covid & ME/CFS. We will investigate legal action for any breach of copyright. We are trusting you to respect the integrity & intention of these products by not taking advantage & not being a cretin.
