“Post Covid Syndrome: Thinking outside the box-a dialogue between patients and researchers at this new frontier”

Date: December 2020.

The World’s first patient-research led conference on pioneering research into post covid syndrome.

Following on from our success cataloguing and documenting the illness from the outset for both the NHS and Government, as well as launching a UK and international campaign for recognition and support at senior Government level in May 2020, the launching of the World’s first sustainable, global hub for engagement and synthesis of this new disease across researchers, institutes, organisations, charities and practitioners ( we are very pleased to be launching the first conference for patients with global experts from our facebook based support group (Chronic Long Covid19).

World’s First Virtual Mini-Conference on Long Covid/Post Covid Syndrome for patients with global health experts

“Thinking outside the box, pushing new frontiers in post covid syndrome”.

Global experts attending

1 Nikita Alexandrov biochemist/biohacker, University of Alabama, USA

Covid19 and the elephants in the room – big misconceptions and important out of the box observations made so far. Secondary infections: why there is no real cytokine storm concern and the issue of mast cell activation & serotonin levels.

I am also inviting Dr Adrian Wentzel to talk of his study on blood serotonin too. He has yet to confirm.

2 Dr David Tuller, University Berkley, California, USA

Proposed topic (TBC) : How CBT/GET has been the bane of the ME/CFS community, the perils of CBT/GET and how it is being proposed for Long Covid patients. What is now needed in terms of research.

3 Im asking a top UK ME/CFS expert (recommended to me) on what research is now needed and how we potentially link up and join Me/CFS with long covid. Is blood the key to doing relevant research?

4 Im going to invite Professor Ron Davies, USA who is aiming to cure his son of ME/CFS & whose book jenny posted yesterday (he is yet to confirm tomorrow evening). Topic to be proposed but likely to be on blood.

5 I havent asked Coverscan and digital mapping of organ damage-since they have done a webinar, but it may be that we could invite Dr Banarjee..or at least next time and ask him to present patients findings from our group…..

Places are limited. Please pay your £5/$5 donation to verify your place. The monies crowdfunded will pay for our patient-researcher interactive forum to start dialogues with researchers. FRIDAY is the deadline. I must confirm numbers early to ensure we have the technology all set up. Please co operate as we are all tired.

I am in the process of organising the first mini conference on chronic long covid. I already have some experts who are interested in talking for 20 mins each (with opportunities for questions/pre submitted or for follow up). It will be managed by myself over either teams or zoom. We hope to have 3 or 4 global public health experts, biotechs, professionals with ME/CFS experience to start a ‘Thinking outside the box’ dialogue and how treatments may evolve.

This will be part of our crowdfundraiser. We have not charged any membership fees and the experts have agreed to do it for free. We have to help ourselves (sadly). We might not have time for all questions but my suggestion would then be you could do so as follow up on the interactive patient forum once its up and running-hopefully soon.

As you know we need to still raise £1120 which will allow the interactive patient forum to get launched which will allow for a continuation of that dialogue and will allow our downloadable game crowdfunder too. Therefore, I am asking any one interested to donate £5/$5 to the gofund us here. I will then send out the zoom or teams details -the joining details to all donators on there (-you will need to leave your email contact there if you do it anonymously i wont be able to send it sorry), next week once ive finalised the list and time and zoom or teams code.

DONATE your £5/$5 here to secure your place. It is only for patients of this group for now as places are restricted. First come, first served!

You can of course donate more than £5/$5 if you so wish but you are only allowed one place. Due to restrictions we cant transfer places or refund sorry.

The conference is being held over the next few weeks (End of November/early December) for patients of the Chronic Long Covid 19 support group on facebook ( Attendees are asked to make the minimum donation of £5/$5 minimum to our crowdfunder to attend. You can make your donation here (it requires a public donation to receive the zoom/teams details to join the mini conference).

  • We need a further £1120 to develop the plug ins for our interactive international forum which will encourage further dialogue between patients and others working in pioneering research.

  • Dates are to be confirmed but we aim to have it in the next one to two weeks.
  • It is likely to be either a Thursday or Friday evening (UK time) to accommodate all our experts who are located around the Globe.
  • The final list of experts will be published shortly.
  • Places are limited to around a maximum of 250 patients.
  • It is not open to people outside of our group, sorry,
  • Places are limited and on a first come, first served basis.
  • The money crowdfunded will be used to set up our patient-research interactive forum on the website.
  • Lisa, our admin and a senior banker, highly qualified with dbs checks operates the Gofund us campaign. All accounts are available and cross checked, referenced in the same way as a bank operate. If successful we will look at doing a follow up.
  • You will be able to submit questions prior to the mini conference. Time will be limited so we will make some opportunities on the forum once its up and running where the dialogue can continue.
  • If successful, we will consider running another one.
  • The virtual mini conference is designed to start dialogues with some of the leading global public health experts, between patients and researchers. These will be drawn from a variety of backgrounds including ME experts, biochemists, pioneers in their field.
  • The conference is entitled: “Post Covid Syndrome: Thinking outside the box-a dialogue between patients and researchers at this new frontier”. It will be held in english.
  • Details to follow.
  • No refunds are permitted and they are donations to the website infrastructure, not payments.
  • You will need to provide a contact on the gofundus to send you the update with the contact details. Due to illness the admins cannot send private mails as we do not keep data records on patients for a variety of reasons.
  • This is run by sick patients and volunteers and so we aim to run it in a professional manner as far as is possible. Given the restrictions in place due to covid we cannot provide the conference facilities or services you would normally expect so it is run as is.