{"id":37154,"date":"2022-10-19T11:00:27","date_gmt":"2022-10-19T10:00:27","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=37154"},"modified":"2022-10-18T22:45:13","modified_gmt":"2022-10-18T21:45:13","slug":"world-me-alliance-asks-who-to-recognise-me","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/world-me-alliance-asks-who-to-recognise-me\/","title":{"rendered":"World ME Alliance asks WHO to recognise ME"},"content":{"rendered":"

World ME Alliance calls on WHO Director General to recognise ME alongside Long Covid<\/strong><\/h2>\n

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\"\"On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health Organization<\/a>, wrote an op-ed<\/a> in the Guardian<\/a>. In it, he lays clear the devastation that Long Covid is causing around the world and sets out five key elements of a plan to drive change.<\/p>\n

It is vital that the impact of Long Covid is recognised at the highest levels, and the World ME Alliance congratulates Dr Ghebreyesus on this stance.<\/p>\n

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[Image by Emerge Australia]<\/p><\/div>However, as more research is undertaken, it is becoming clearer that a large proportion of those with Long Covid now meet the criteria for an ME\/CFS diagnosis. The WHO must recognise this as efforts to find treatments and a cure continue.<\/p>\n

The World ME Alliance has written to Dr Ghebreyesus calling on him to meet with representatives.<\/p>\n

Dr Ghebreyesus has previously committed to reaching out to ME experts, and we hope that through collaborative efforts we can learn from ME and ensure that progress for people with Long Covid doesn\u2019t leave the millions already suffering with ME behind.<\/p>\n

Read the full letter from the World ME Alliance and its 19 members, which includes WAMES, representing Wales.<\/strong><\/p>\n

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Dear Dr Ghebreyesus,<\/p>\n

Our World ME Alliance read your recent Guardian article<\/a> \u201cThe data is clear: long Covid is devastating people\u2019s lives and livelihoods\u201d with great interest.<\/p>\n

We would like to congratulate you and the World Health Organization for taking this issue so seriously. In particular, we appreciate your acknowledgement of the devastation Long Covid is causing, the need to listen to patient groups, and the need for sustained investment to expand our scientific understanding so better treatments and clinical management can be developed.<\/p>\n

While we congratulate the efforts to innovate around Long Covid, we also see that people with myalgic encephalomyelitis\/ chronic fatigue syndrome (ME\/CFS), many of whom have already suffered decades of the same devastation you have described, face a lack of recognition and global response.<\/p>\n

The most prevalent Long Covid symptoms \u2014 crippling fatigue, post-exertional malaise, widespread inflammation, and cognitive dysfunction \u2014 mirror those of ME\/CFS. As more research is undertaken, it is becoming clearer that a large proportion of those with Long Covid now meet the criteria for an ME\/CFS diagnosis, also known to be a viral-associated disease.<\/p>\n

Additionally, many studies1, 2, 3, 4, 5<\/span><\/em> are making key scientific connections between ME\/CFS and Long Covid.<\/p>\n

This is not new. Outbreaks of viruses such as swine flu (H1N1) and Ebola, as well as common viruses including Epstein-Barr Virus (EBV), demonstrate that chronic illness triggered by viral infections, including ME\/CFS, are a recurrent phenomenon.<\/p>\n

We would welcome a meeting with you to follow up on past commitments<\/a> to establish contact with ME\/CFS experts and patient organisations. We believe this could fast track support for people with ME\/CFS and also those with Long Covid, ensuring learnings from ME\/CFS are taken advantage of, and that progress for people with Long Covid doesn\u2019t leave those with ME\/CFS behind.<\/p>\n

Yours sincerely,
\nSonya Chowdury, Co-Chair of the World ME Alliance, CEO of Action for M.E.<\/p>\n

Oved Amitay, Co-Chair of the World ME Alliance, President and CEO of Solve M.E.<\/p>\n

Sian Leary, Head of Advocacy and Communications, World ME Alliance<\/p>\n

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