{"id":33471,"date":"2021-11-12T10:41:49","date_gmt":"2021-11-12T10:41:49","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=33471"},"modified":"2021-11-15T07:25:57","modified_gmt":"2021-11-15T07:25:57","slug":"word-me-alliance-writes-to-who-re-long-covid-definition","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/word-me-alliance-writes-to-who-re-long-covid-definition\/","title":{"rendered":"World ME Alliance writes to WHO re long COVID definition"},"content":{"rendered":"

Will the World Health Organization\u2019s long COVID definition help or hinder?<\/strong><\/h2>\n

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\"\"WAMES has joined other members of the World ME Alliance in writing to the World Health Organization<\/a> (WHO) concerning their recently published definition of \u201cpost COVID-19 condition\u201d, commonly known as long COVID.<\/strong><\/h3>\n

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\"\"<\/p>\n

While we commend the work undertaken to ensure people with long COVID are receiving a diagnostic label and subsequent support we remain concerned that a vague definition alone could hinder research and care efforts.<\/p>\n

Further work, including stratification of sub-types is vital, and we call on the WHO to engage disease experts from areas such as ME in this.<\/p>\n

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Read our letter below:<\/strong><\/h3>\n

Dear Dr Tedros Adhanom Ghebreyesus, Dr Ren Minghui and Dr Janet Diaz,<\/p>\n

On 6th October, the World Health Organization published its definition of post COVID-19 condition (PCC).<\/p>\n

Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others* and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID-19 episode or persist from the initial illness. Symptoms may also fluctuate or relapse over time.<\/em><\/p>\n

The undersigned organisations work for the benefit of people with myalgic encephalomyelitis (ME), a noncommunicable disease (NCD) with great experience of vague diagnostic definitions. There are now so many definitions of ME that research often isn\u2019t comparable. Many of these definitions select such a broad population that research outcomes are considered of low or very low quality in systematic reviews. In fact, there is remarkable similarity between some of the definitions of ME and the recent definition of PCC published by the WHO.<\/p>\n

We are concerned that this definition will lead to some of the same outcomes for people experiencing PCC as has happened for people with ME. Defined clinical pathways are clearly needed, and we commend the WHO on working towards this. However, now is the time to prioritise the categorisation of subtypes in order to expedite the delivery of appropriate treatment or management approaches for people presenting with different symptoms.<\/p>\n

As research into this novel phenomenon develops, various phenotypes are being differentiated, and the WHO definition could emphasise this. (1) In particular, it is of vital importance that post-exertional malaise (PEM) is screened for, and where present people are supported to pace their energy levels within known limits (as per new guidance from the UK\u2019s National Institute for Health and Care Excellence). (2) The findings of the Patient Led Research Collaborative, that \u201c89.1% of participants reported experiencing either physical or mental PEM\u201d, (3) affirm this.<\/p>\n

There are many overlaps between the symptomology presenting in PCC and in ME. However, certain subgroups do not experience the symptoms of ME. We must now ensure that people diagnosed with PCC are appropriately sub-categorised, to ensure that we do delay the advancement of scientific understanding through:<\/p>\n