New Zealand 2023: ME Support's Long Covid online resource

Andy

Andy

Senior Member (Voting rights)
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Online research launched to help those with Long Covid

"A free comprehensive online tool has been released today to help those suffering from Long Covid.

Chronic fatigue support group, ME Support, said people with Long Covid have been calling for more support and information for the past two years, and its tool could help hundreds of thousands of New Zealanders with Long Covid symptoms."

https://www.rnz.co.nz/news/national/487368/online-research-launched-to-help-those-with-long-covid
 
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Manager and vice president of ME Support, Kate Duder, said: "It is estimated that 10-20 percent of everyone who had Covid-19 will experience Long Covid symptoms, that's over 250,000 New Zealanders, and some are very severe, leaving them unable to work or carry out normal daily tasks."

She said the tool consisted of "a comprehensive series of videos ... for anybody who has or thinks that they might have Long Covid".

The videos covered a range of topics and symptoms, including energy, sleep, pain management and nutritional support.
Click to expand...

The tool was created by ME Support with funding supplied by Te Whatu Ora/Health New Zealand.
Click to expand...
i.e. funding from the government
Please let it be good.
 
Video 2:
ME/CFS and Long Covid are so hard to present in a way that looks credible. And there are a lot of ways to get things wrong. I thought this video was fairly good, but there were some problems.

There's the usual one of presenting a list of causes of Long Covid, in this case, as if they were proven. It is prefaced by a verbal 'Research suggests', and Dr Anna Brooks says things like 'another train of thought' which is helpful in conveying uncertainty. But I'm pretty sure that many people coming to this without much background in post-infection syndromes are either going to assume the things listed are true, or that none of it can be true. I think people should try really hard not to provide a biological explanation, as we are all just guessing. The causes listed include:
-ongoing inflammation in the body and the brain
-disrupted blood clotting pathways
Professor Tate unfortunately presents things very definitively, talking about inflammation in the periphery and in the brain, and identical immune signatures in ME/CFS and Long Covid.

A particularly concerning section was with a man talking about how he has symptoms of FND (difficulty walking), and how the neurologist confirmed that his FND had been exacerbated by Covid and so now he has Long Covid as well. Clearly the person making the video doesn't know about the politics of FND - it would be better to avoid talking about FND in the way that it was. Normalising FND is a bit of an own goal.

Later in the video when the same man is talking about his high resting pulse, he says 'there seems to be no organic reason for these things happening so it seems to be related to the nerves and things just sending funny messages around the place". It's that sort of attempt at explaining the pathology that I really think needs to be avoided.

At the 16 minute mark, the presenter says 'It's important to note that there are a range of symptoms that could be a sign of something more serious', (with an emphasis on the 'more) and then there is a list of symptoms that could indicate heart disease, cancer, stroke and the like. It's good to make people aware that their symptoms may not be Long Covid, but phrasing it as "symptoms that need to be checked out by your doctor immediately" would be better as it would not make it seem as though Long Covid is not serious.

Warren Tate says "ME people and LC people have this hypersensitivity of all sensory things". I think all encompassing statements like that should be avoided. Not everyone does, and not to all things and not all the time. When we are fighting against prejudice, against beliefs that we are just overly sensitive people overreacting, I think what is said needs to be very carefully edited.
 
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