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Ed Yong's Mastodon account. Doesn't seem to be active, but for the record in case he ever switches to there from Xitter.
https://mastodon.xyz/@edyong209
https://mastodon.xyz/@edyong209
But he is doing it, and doing a good job of it, when the vast bulk of the mainstream media are not.
It is a brilliant article. I'm grateful for it, and I will use it for advocacy.
The paragraphs where he speculates about ROS and the like are also a bit weak. Perhaps they will serve to help convince some people that ME/CFS is real, but I think they might, as Duncan says, put some people off.
I just wish Ed had not ventured into promoting supplements and other treatments which really do not have evidence to support their utility for ME/CFS:
The paragraphs where he speculates about ROS and the like are also a bit weak. Perhaps they will serve to help convince some people that ME/CFS is real, but I think they might, as Duncan says, put some people off.
Hoopoe
Senior Member (Voting Rights)
I think this fracturing of personality happened to me, even if I wasn't severely ill. For many years I was just ill enough to fail every time I tried to rebuild my life, and to have difficulty socializing. I was undiagnosed and also had no access to the collective wisdom of other patients, or even anyone that really cared and tried to help me.
It felt like I was a mere shadow of a person with little personality to express. Other people had varied interests, well developed skills and could hold a conversation on many topics and tell interesting stories about their travels to other countries and things like that. They were rich in personality.
The illness stunted my development. I'm still struggling with this lack of personality.
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Simon M
Senior Member (Voting Rights)
@Hubris the comparison with prison, where you also get a release date, and with needing to a wheelchair is very apt.
The other one that strikes me is the impossibility of a bucket list
I don't envy people with progressive/terminal diseases. But I borrowed the illnesses bucket list idea in the year 2000, and I've not be able to do a single thing on it. Top of my list was going to watch Wales play Ireland in the Six Nations with my Irish dad. The Millennium Stadium is only an hour away. Sadly, my dad died last year – and we hadn't gone.
Even when my dad was well into his 80s with Parkinson's, he could still have made it with some help. I never could.
That is the annihilation of possibility.
The other one that strikes me is the impossibility of a bucket list
I don't envy people with progressive/terminal diseases. But I borrowed the illnesses bucket list idea in the year 2000, and I've not be able to do a single thing on it. Top of my list was going to watch Wales play Ireland in the Six Nations with my Irish dad. The Millennium Stadium is only an hour away. Sadly, my dad died last year – and we hadn't gone.
Even when my dad was well into his 80s with Parkinson's, he could still have made it with some help. I never could.
That is the annihilation of possibility.
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Not to diminish the enormous losses, but just on the richness or otherwise of personalities:
Of course we on the forum don't get to see members "in the round"; we have a limited focus here. But, I feel as though I know the regular posters, and none of them comes across as lacking in personality. I see the varied interests, from cats to superconductors, and the conversation on deep topics and on biscuits. 'Stories of travels' can be bought way too easily to count much as evidence of a rich personality.
I'm reminded of the woman who wrote a book that was worth reading about the snail she could see from her bed. I don't want to make some saccharine comment about adversity forging character, and for sure pain and loneliness and brain fog take their toll. But, I think there's as much richness of personality here as anywhere I have been.
I read in a tweet that Ed Yong wanted to focus in on the symptom of fatigue for this article, having already done an article on brain fog. 'An anatomy of a symptom' or some phrase like that. So the prominence of fatigue was a deliberate choice, and I think it worked. At the same time, I think he manages to explain that ME/CFS is more than fatigue.
Perrier, I'm so sorry to hear that your daughter is still having to endure such severe ME/CFS.
Andy
Retired committee member
Or an alternative take is to praise how well he has listened to patients and, in taking them seriously, accurately reflected what they said in his writing while still making the article readable. There is far more to the article than a simple regurgitation of patients' accounts.
Additionally, he has done well in getting this, and previous article on related subjects published, given the general lack of interest there is in these kinds of articles.
If we'd have a plethora of articles like this, just merely being able to point friends and relatives towards it would be an immense boon for patients. That's at the very minimum.
*edit* I'm phrasing this wrong as this article is something we can point people to. If we had a plethora of it, it would get instilled in public knowledge imo.
Hoopoe
Senior Member (Voting Rights)
That this article is so good is mostly because Young is not redefining the experiences of patients (at least not to a degree that leads to clear distortions). Which shows how pervasive a problem this is.
If the CBT/GET people were to comment on the article, they would probably attempt to redefine patient experience. They might redefine the fatigue and PEM that get worse with exertion as something that can be treated with exertion, even if no patient is describing this. Or if they're more into garneresque wishful thinking, claim that the negative perception of these symptoms is a form of learning and maintenance of symptoms.
If the CBT/GET people were to comment on the article, they would probably attempt to redefine patient experience. They might redefine the fatigue and PEM that get worse with exertion as something that can be treated with exertion, even if no patient is describing this. Or if they're more into garneresque wishful thinking, claim that the negative perception of these symptoms is a form of learning and maintenance of symptoms.
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I have this problem as well. Psychologists have told me that I'm a ghost, I'm like someone that doesn't exist. It's pretty spot on, except that they were trying to interpret this as a symptom of a mental illness because of their flawed training.
To them, it appeared that I have no interests. I think the reality is a little more nuanced.
I became ill at the start of high school (almost 30 now) and since then have not been able to interact physically or mentally with the world because of this illness.
I think that many people need to interact with the world in order to develop interests and things they are passionate about.
If everything is figuratively a blurry mess, and I feel like I'm having the worst flu of my life (and it never goes away), and I never leave my house (or recently, bed), how am I supposed to be truly interested and passionate about something? For me, I don't think it is possible.
I used to be interested in a variety of scientific subjects, and did really well at them, now I cannot do basic math or any kind of significant cognitive effort. If I attempt to even try to learn what is written on a book, I will get devastating PEM for weeks. So what exactly are my "interests" supposed to be? My brain is annihilated.
I think a more sensibile question would be to ask me what I think my interests would have been if I hadn't gotten ill. I can give an estimation, but it could easily be wrong because of 1) my brain fog and 2) inability to account for all the world experiences I would have had after the time that I became ill.
I think in very broad terms I can say my interest is that I wish I could be productive in some way. Clearly, it is completely unattainable no matter how hard I try.
I think all the people that blame me for my "lack of interests", it says more about them not understanding the illness than it does about me.
Hoopoe
Senior Member (Voting Rights)
Exactly. A lot of what could be called psychosocial dysfunction is just a consequence of being physically ill. And I don't mean being depressed because of illness.
I mean things like having no opportunities to develop social skills because of physical limitations. I can leave the house and meet other people, but I tend to begin feeling unwell relatively soon and this interferes with the whole socializing thing. I could force myself but other people can tell I'm uncomfortable which makes the experience unpleasant for everyone. Other people of my age would make new friends by taking up a new hobby but that requires traveling and exertion.
Lack of confidence is another thing. How am I supposed to build confidence in certain areas and activities when I can't do these activities. It's normal for an inexperienced person to feel insecure. Confidence comes with experience, which comes with doing things. This is not a psychological problem. Yet most people would say lack of confidence is a psychological problem.
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Thank you. From what I see it looks more like severe weakness, not fatgue: a complete inability to generate energy, and when after days and weeks of immobilization some energy is manufactured it is a tight rope walk because using/ overusing what is in the bank ( which you can’t see) leads to PEM and often even a crash. My feeling is that one article, rich as it is, is not enough. Weekly articles with different angles are required: some more simple some complex like Mr Yong’s.
Not sure if he highlighted this next point as don’t have article: it is important for the reader to understand that there is never a return to normal, the person with ME is always very sick, enduring symptoms, but the intensity may alter. If he pointed this out— bravo. I don’t know. I’m just very discouraged by the culture we live in which doesn’t react with urgency and seems to allow young folks to endure years of torment in their bedrooms.
You describe this very well and my daughter has used similar words. No one should have to have this happen to him or her. We don’t really live in a careful and caring world if young people are abandoned to lie in their sick beds for years on end. There is no urgency anywhere at all except in parents frantically looking for help.
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Another brilliant perceptive post dear Hubris. Thank you. Actually there isn’t enough work done on the effects of being forced into this kind of life and what it really does emotionally and mentally to a person who has to amputate every single human desire day after day because otherwise their illness gets unmanageable.
It's like asking Tarzan to come out of the jungle and show confidence at a formal dinner with business executives. Or grabbing a business executive, stripping them naked and throwing them in the jungle to fend for themselves. I don't know how you could possibly feel confident in those scenarios.
