The Team

Lisa Milburn

GOFUNDUS Campaign Manager & Administration, West Yorkshire

Hi my name is Lisa and I’m a mum of 2 boys, age 12 and 10. I have a full time job, a busy social life and loads of boys stuff happening on evenings and weekends. That is how I would have introduced myself in February. Then in March, Covid happened. I ended up at hospital struggling to breathe, and was told you’re ill, but not ill enough to be ventilated so go home and rest because that’s the safest place to be. That’s exactly what I did, and I’m still here. The last 7 months have been a rollercoaster, ups, downs, spirals and at times not really knowing which way is up. I’ve had symptoms we all recognise, the indescribable fatigue, breathless, tremors, chest pain, tachycardia, the list goes on.

I am determined that I’m going to beat this thing , no matter how long it takes. I’m on numerous medical research projects and am trying to do as much as possible to help the scientists learn and find a way forward. I try to see the positive in everything and I’ve met some amazing people on this journey, who I’m sure will now be friends for life.

I keep reminding myself that “Sunshine always follows rain”. It just so happens that this is a rather long storm!

Lou says…”Lisa has been a pillar of support to myself, often calling all hours of the day, even whilst she was on a break. Together over the months we’ve had some great chinwags over a cuppa Yorkshire or wine. I put her tenacity down to being a true Yorkshire girl and having that dose of everlasting ‘Yorkshire Grit’. You meet true friends on this journey who you know you can always rely on. Lisa manages our ‘Gofundme’ campaign, as a qualified banker with high security credentials. Thank you for your work and support, Lisa.”

Stephanie Taylor

Administration Chronic Long Covid 19 Group.

My name is Steph, I am a 32 Mom of two. Who was perfectly healthy before coming down with covid on 6th February. First symptom was a major nose bleed. Followed by burning nose and lungs. Cough, no taste or smell, fatigue. At the time there were 3 confirmed cases in the uk and the symptoms list didn’t include my symptoms. It wasn’t until two months later I realised I was still suffering with the long term effects of the virus. I have suffered with a myriad of symptoms and issue’s for the last nine month’s. Persistently Gaslighted by doctor’s and medical professionals.

The support from the Chronic long covid group has been invaluable source. Not only Helping me to cope with the changes I’m going through and supporting others going through the same thing. But helping to give us a collective voice. To raise awareness so that we and others like us don’t feel completely alone and let down by medical professionals.

Lou says, “Stephanie has been a pillar of support throughout our campaign and has always been there to back up any decisions we have taken. Despite being ill herself, Stephanie has made herself available day or night to help promote the group’s cause. Thank you Stephanie on behalf of everyone. Another angel in disguise!”

Gilly Sykes

Administration, Chronic Long Covid 19 Group, Ashton, UK.

Hi I’m Gilly and I’m 46. I contracted covid from my 75 year old father at the end of March who sadly passed away. I was looking after him at his home after he came home from hospital where he was being treated for a heart condition. I started with diarrhoea, fatigue, loss of smell and taste and a change in my cough. I was tested at the Christie Hospital in Manchester as I was a breast cancer patient on antibody treatment. I developed awful cramps and my arthritis seemed to magnify so much that I’ve recently had a bone scan. I still suffer with painful joints that weren’t painful before, continued fatigue and breathlessness.

This group has been invaluable to help understandings and realise how vast this condition is and how it affects in different ways. As one of the first members I have seen this grow into something that has the powers in charge are finally taking notice of.

Lou says, “I have known Gilly since I was a little girl as we grew up on the same street together. I knew we would be a ‘tour de force’ when I became aware of her long covid struggle. One of our first members, Gilly has been a total inspiration to us all, battling on despite loosing her beloved father to the disease, earlier in the year, then, battling ongoing long covid having beaten breast cancer followed by further bereavements, including her beloved dog, Benny’. What a year is has been. You are a true inspiration Gilly and I have no doubt you will beat this. Gilly has worked tirelessly in the group with its general administration and managing new members. Thank you for all you have done and continue to do. We also thank her daughter Lucinda for designing the group’s initial logo, before it changed name. Im sure we will see more graphics in the future.

Andy Christophi

Administration & IT Support, Suffolk, UK

Hi, Andy here, welcome and glad you’ve found us. Join the group and ask/tell as little or as much as you care to.
We have very few rules, these have come about for everyone’s safety. As Im not a long covid sufferer but someone who believes in getting justice I decided to join the group to support it. Here’s a little background info on me.

Am an Artist and Vegan Animal Rights Activist. My aim in life is to fight against all forms of injustice, insofar as I can. My biggest passion is Animal Rights; animals are here with us, not for us. Every sentient being has the right to live their life with their own kind in their own natural environment. My biggest AR cause for the last few years is to support Japanese activists live-streaming to end the annual 6-month dolphin drive-hunt (September to March) into The Cove, Taiji made famous by the 2009 award winning documentary #TheCove (Ric O’Barry, trainer of the dolphins who played Flipper set up Dolphin Project and has worked tirelessly for the last 50 years to end dolphin captivity. His favourite dolphin swam into his arms looked up at him and died. Dolphin suicide. Dolphins are hunted down as they migrate past Taiji. They are driven into the cove, netted in where they will go through a selection process; chosen as show-dolphins, most popular species bottle-nose “Flipper” or slaughtered to be sold as meat.
Hardly any Japanese eat dolphin meat, most Japanese do not know this goes on. This is government subsidised by corrupt officials and would otherwise soon end. Majority of Japanese citizens have no idea this goes on and the aim is to inform and educate by sharing/tweeting the livestreams so that they can join forces to end this.

So, lets all be who we are and help each other along the way.

Lou says, “Andy has worked tirelessly as a non long covid patient supporting us patients (often as times when we were unable to manage much). I don’t know what I would have done without her help on twitter (I am getting there!) and with general it support on the facebook group page. Andy has stepped up to help out when some of us have had to do less and for that I am eternally grateful. Thank you Andy so much. You have been invaluable and are a pillar of strength to us.”

Louise Barnes

Founder & Group Administrator, Website Manager. Suffolk, UK

Lou set up the post covid syndrome support group international in May 2020 after realising she was still ill with a post viral illness, post covid. She set out to look for patterns both nationally and internationally as a highly skilled Geographer who has taught the Geography of Diseases. Recognising something wasn’t quite right, she set out to seek anomalies and patterns by setting up the first professional survey platform for long covid patients in a support group (which remains open) and then used her contacts as a former Government employee to reach out to senior Cabinet Ministers and organisations. She has campaigned tirelessly for recognition of the disease at all levels and sits on the UK NHS Taskforce for Long Covid, the NICE review Committees and the NIHR. She has advised the Mount Sinai team, the NHS, NICE and the NIHR on Long Covid effects as well as working with numerous research projects in the UK (UCL, Coverscan, Oxford/Cambridge, others). She suffers an undiagnosed autoimmune condition & is well versed in chronic fatigue.

Lou says, “Setting up and running the group gave me an entirely new focus in my life at a time when things could quite easily have gone the other way. I have been able to find myself and new opportunities to use my skills to help others at both a national and a global level. Several groups have worked tirelessly to get recognition and finally it is beginning to pay off, though help still seems spartan and there are deep concerns about us not being treated physiologically. Time will tell how this will evolve. After 8 months of hell, I think we are all ready for some much needed support in terms of tests, scans, medicines and trials. Treatments exist and so we need to start seeing these get put in place.”

She has been instrumental in cataloguing the illness throughout and documenting it for use by medics, researchers and shared it at senior Government level. She has set up meetings with Government Ministers and run a huge UK and international media campaign to get clinics set up (petition), set up research projects for her group and helped developed them internationally, corresponded with senior politicians and those in authority and regularly featured in both the UK and international media (DailyTelegraph, Sunday Telegraph, The Times, BBC, Fuji tv, Osaka tv, Daily Mail, The Sun, The Mirror, The Irish Sun, The Guardian), as well as countless tv appearances globally. She has used her expertise in languages to ensure that international victims of post covid syndrome can be supported. She set up this website as the World’s first portal for the forgotten victims of covid 19 so that there is a central place to share and synthesise information globally on the disease, with the aim of helping to promote further research in post viral illnesses. Lou would like to personally thank the team and those who have been central in running the group, campaign and website as well as promoting the petitions and campaign. The focus now has shifted to ensuring that we will be guaranteed tests, scans and medicine (trials) to rule out causes of our physiological disease and that it will not be treated with psychological therapies like GET/CBT like other post viral illnesses have been. She has been advised by global public health experts and senior members of the ME/CFS Community and would like to thank these people for their unabating support.