How do we get Dr Elaine Maxwell to understand that ME has multiple symptoms, she seems oblivious in the NIHR article?
Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 in the health and social care systems https://www.nihr.ac.uk/funding/prp-...9-in-the-health-and-social-care-systems/25012
https://www.strathallantimes.co.uk/...g-covid-four-different-syndromes---academics/ 'Academics said that more work is needed to help those who are suffering as they said that many are “not believed” when they seek help. Ongoing symptoms can include breathlessness, chronic fatigue, “brain fog”, anxiety and stress...... They called for anyone who believes they are suffering long-term after-effects to be logged as such in their NHS records, and the health service should adopt an approach of a “working diagnosis” to help those in need. ......Academics stressed that the understanding of the effects are still at an early stage as they called on people living with the after-effects to get involved with research. Dr Elaine Maxwell, review author, said: “We know from a number of surveys both in the UK and across the world, that a significant number of people experience ongoing effects after a Covid-19 infection. “The list of symptoms is huge and covers every part of the body and brain. We believe that the term 'long Covid' is being used as a capsule for more than one syndrome, possibly up to four. Dr Elaine Maxwell “We heard from people who are still unable to work, study or care for dependents several months after their initial infection. “We believe that the term ‘long Covid’ is being used as a capsule for more than one syndrome, possibly up to four. “And we believe that the lack of distinction between these syndromes may explain the challenges people are having in being believed and accessing services........
I suppose the fear will be that if and when distinctions come to be made, those with PVFS will be ignored, in accordance with recent practice.
I pretty much assume the ME guidelines will apply to those. Not entirely sure about the last one with neurological symptoms, which is clearly also ME, but would likely be chucked into the FND black hole of doom, even though it's obviously typical ME but since the definition of ME usually ignores neurological symptoms we get the FUBAR treatment again. Which is why it's a bit disappointing that long haulers don't feel it applies to them right now when it's critical to change it from harmful to, well, not harmful. They could help make it right but the timing is just a bit off for that.
