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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Actually, Gingergrrl, don't worry about criticism. If someone can't stand the heat, they should stay out of the kitchen. Your points are well taken. The more I think if the interview the more disappointing and even irresponsible I find it.
I listened to the podcast and ignored the written summary. But the other way around would paint a different picture.The audio (which is 44 minutes long) discusses the illness in much more depth and is far less disappointing than the written summary (which is unfortunately the only thing most non-patients will read).
I'm happy Laura is doing better but also was discouraged reading this for the reasons others have mentioned... and that it is in Stanford Medicine.
Edit: Meant to say disappointed instead of discouraged.
Yes I also wonder what treatments she has been doing. Im so happy for her, but the article makes it sound as though all she needed was the courage to change her life and that she did a kind of car based GET in order to get out of her house and travelling again. Im pretty sure it wasn't that easy- but I would like to know what else helped her.
As much as I want to know her treatment protocol, I respect her right to privacy. If her treatments were expensive or difficult to obtain, then she would get criticized that she is priveledged. If they are psych meds, then she could get critized for that. If they include CBT, GET, or PT, she WILL get criticized. So if I were her, I would not reveal any details. From what I read, the woman has gone thru enough. She deserves some peace and tranquility.I may list a few of my wished-for follow-up questions in other post
Yes I also wonder what treatments she has been doing. Im so happy for her, but the article makes it sound as though all she needed was the courage to change her life and that she did a kind of car based GET in order to get out of her house and travelling again. Im pretty sure it wasn't that easy- but I would like to know what else helped her.
Honestly, I was pretty disappointed with the interview... I came away thinking that sheer willpower and "pushing" beyond ones comfort level is all that is needed to be somewhat well again. I would have preferred more discussion on her actual treatment(s) and less about doing more = feeling better. Its just difficult knowing that I've personally pushed myself until I was in the emergency room. And I've never been able to "teach my brain to tolerate" the symptoms.
That said, I am very happy for Laura and I really appreciate that she is raising awareness. I wish her all the best!
I have had treatments that allowed me to do more so I did, testing and pushing my boundaries. The treatments didn't last for me, its nice if they do for someone. Sometimes though they helped for years. In every case its been treatment first, followed by testing to see what I can do.Agree. And as we feel a bit better, with treatments, we will be able to 'test the waters' and do a bit more. Recovery from a debilitating chronic illness is a long process filled with ups and downs.
Some patients have this as a constant thing. I mostly got past that two decades ago, but from time to time they return for a bit.I've had vertigo during certain bad spells as part of my ME and it was pure hell.
Same here I still get it sometimes.I've had vertigo during certain bad spells as part of my ME and it was pure hell.
I know lots of people want to keep medical details private, but it always ends up with ME with it looking like a miracle of some kind and reinforces the belief that its possible to get well with will power.
I don’t feel contempt for the medical community. Different doctors are different people. I got my diagnosis from a wonderful guy, the head of infectious diseases at Johns Hopkins, who was the first person who was willing to say, “You have a serious disease, and the other people who have dismissed you are simply wrong. I don’t know what’s wrong with you, but I believe that you’re very ill.” That took humility for him to say. I am so grateful for it. I walked out of there happy even though he said, “I can’t treat you. I don’t know what to do for you.” But simply telling me, “I respect you, and I have a limit to my understanding of disease,” was a beautiful thing.
My physician in Washington, D.C., would exhaust himself trying to help me, and he would stay with me for hours. He would make house calls because I couldn’t come to him. He was wonderful to me.
The problem with the interview, starting with the title is the connotation that her increase in functioning was due to motivation. She used to be frail but the inspiration of her boyfriend and the fact that she wanted to move to be close to him was an inspiration that got her out of her frailty.