This is an organisation that was established in America but has grown to include over 50 representative organisations from around the world. The key reason we joined is because we want to be part of the continuing narrative that surrounds Long Covid and ME/CFS.
We want to be a part of the discussions that relate to e.g., symptom overlap, management, and ongoing clinical and social care. We want to see that people with ME/CFS are included in Long Covid research because we believe there are benefits to both communities.
It is our position that Long Covid for many is another example of a post-viral fatigue syndrome that can develop into ME/CFS. With an estimated 150,000 possible cases of Long Covid in the UK alone, this will clearly have a big impact on the ME/CFS community.
Not everyone with Long Covid will develop ME/CFS. Some will have experienced organ damage (lungs, heart, liver, kidneys) that might be the cause of continued disability and which will require the involvement of specialist medical disciplines.
But we feel that for most, especially those who caught the virus and managed it at home (and were not admitted to hospital), the likelihood is that continued disability could result in them meeting the criteria for ME/CFS. You can read more about the Long Covid Alliance and what it hopes to achieve, by visiting their website. We will be meeting with members of the alliance on Friday evening and will report any future developments.
We would much rather be part of the discussions around Long Covid than be on the outside looking in. And we hope we have your support.