Another fantastic article by Ed Yong, on the abysmal experience of health care workers dealing with gaslighting and denial from their colleagues. Very similar to Royal Free and other outbreaks, just on a much larger scale. It seems that health care workers do not like being treated like they treat patients. Some also seem concerned that once they become patients, everything they say is dismissed as irrelevant. They do not seem to enjoy being on the other side of that experience. Much to learn here. When one journalist genuinely understands more about a disease than 99.99% of medicine combined. In just a few months. Wow. Embarrassing. https://www.theatlantic.com/health/...orkers-long-covid-are-being-dismissed/620801/ But these problems are familiar to people who have myalgic encephalomyelitis, the debilitating condition that’s also called chronic fatigue syndrome. Physiotherapists with ME/CFS reached out to Oller and Brown and told them that their symptom had a name: post-exertional malaise. It’s the hallmark of ME/CFS and, as that community learned the hard way, if you have it, exercise can make symptoms significantly worse. ... Long COVID has forced many of the health-care workers I interviewed to confront their own past. They worried about whether they, too, dismissed patients in need. “There’s been a lot of Did I do this?” Clare Rayner told me, referring to the discussion in her Facebook group. “And many have said, I did. They’re really ashamed about it.” Amy Small, a general practitioner based in Lothian, Scotland, admitted to me that she used to think ME/CFS symptoms could be addressed through “the right therapy.” But when Small got long COVID herself, some light work left her bed bound for 10 days; sometimes, she could barely raise a glass to her mouth. “It was a whole level of bodily dysfunction that I didn’t know could happen until I experienced it myself,” she said, and it helped her “understand what so many of my patients had experienced for years.”
I don’t think it’s ok to generalize in this way. It sounds like you think it’s ok that healthcare staff is traumatized when they are patients just because they used to work in healthcare. That makes me very sad because this is something I myself have struggled to deal with since I became ill: That healthcare has treated me so badly that I do not know how I could return to my job as an occupational therapist ever, even if I recovered completely. And no I have never treated a patient the way I have been treated. (Edited)
I agree we shouldn't generalise. There are lots of lovely caring intelligent health care workers who really listen to patient and treat them well and who take the time to follow up patients they have treated to find out whether the advice they gave was actually helpful or caused harm, and read the research with deep understanding of what it's really showing. It's just unfortunate for us that so many who have risen, like scum to the top of the pond, in the ME/CFS BPS world are not like that. And there are lots of otherwise excellent health care workers who are so over worked that they don't have time to read in depth and spend half an hour instead of 10 minutes with each patient, so they are forced to take short cuts like reading the bits on treatment in the 2007 NICE guideline on ME/CFS, and trusting it to tell them the right advice to give. And who might have listened to a talk by Trudie Chalder who tells them that ME fatigue is just normal tiredness, and ME pain is just normal aches and pains, and we're just catastrophising and scared to exercise. I don't blame my 30 years worth of GP's who told me to try to get more exercise. I don't even blame them for seeing ME or CFS on my notes and thinking that means I get a bit more tired than most people. They are not bad people, or uncaring or lazy, they are badly advised. But I do blame the BPS people for perpetuating that myth and getting it written into guidelines.
He is really good. It must have taken a lot of effort to get a good understanding of the problems in this area.
Yes. That we should do. And we should talk about the misstreatment and not tolerate discrimination and malpractice. And we should most definitely talk about the ableism in helthcare.
I was interested to see that his sister in law has long covid. She was quoted in this story. He seems to understand the issues so clearly and speak so well to our experience that it always amazed me that he wasn't sick with this himself. I had been wondering what his connection to this was. Unfortunately, it often seems like you either have to get it or have someone close to you get it to have any idea. I think it's just so unfathomable that a body could break down so completely in this way. I myself had no idea until I got sick.
How can health-care workers not know about Long Covid? It just baffles me, and I simply don't understand it.
If there is no organ damage or no abnormal tests, then it doesn’t exist. Also ‘health care workers’ are wide ranged, from geriatric care assistants to pathologists to OR nurses to pediatric oncologists. Health care workers don’t know everything because they are not exposed to it and do not need to learn it. And by the way there is no formal long-COVID education as of yet (but i am very worried when there is something about it)
It hurt me so much that doctors will only believe the sort of life I have endured when they feel like that themselves and people complain about being unable to live a normal life for a few months. Where were they all when we were trying to get anyone to notice us? I think my hurt is because I always felt that the problems I had were just something that happened, life isn't fair, there's always someone worse than you, everyone has problems, just get on with it. But now the same profession which wrote me off is demanding that someone helps them and saying what is happening to them is terrible. No one thought it was terrible when it was just us did they? Of course it passes, and maybe something will get done now and I can stop worrying about my children getting sick with no help either and even if it comes too late for me there are lots of us who could do with a chance at normal life . We should have got proper treatment and respect and it actually is wrong to abandon people the way it happened to us but every now and then, it hurts.
It's pretty clear that medical information is communicated top-down. The top hasn't communicated this because they are in denial. Medicine is seriously lacking in leadership, there just isn't any.
Yes, what with him, and O'Neill, and probably a few other journalists, it seems that when we find someone who writes about the subject, be it LC or ME, with sympathy and compassion, we should be asking "who do you know who has it?"
That is changing. People are being convinced by the facts like our own Dave Tuller and Jonathan Edwards. Hughes
