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Discussion (55 Comments)Read Original on HackerNews
This comes from a part of social media where medical conditions are redefined in ways that make them sound more broad, generic, vague, and common than they really are. This is why this corner of the internet diagnoses themselves with many of these conditions together: The definitions they believe are like horoscopes where anyone who has non-specific symptoms or even psychosomatic conditions can match the definitions given. The result is groups of people on TikTok or Facebook groups who all think they have a list of 5 different medical conditions and who are all frustrated that actual specialists for those conditions won’t agree with their self diagnoses.
The article is really bad. I do not suggest anyone take it seriously.
Unless you learned basic typography that is.
This eyesore looks like it was done in Word & Co.
What a pity, given what a treasure trove this is.
As someone with a partner who has ADHD I think this should be mandatory reading for any GP.
The document mixes science with pseudoscience. It was put together by someone who subscribes to the current social media trends that blend together real diagnoses in a way that have been distorted and stretched to become generic catch-all explanations for vague conditions
This mess where conditions like MCAS, hEDS, POTS, and ADHD are all swirled together into a cluster of co-diagnoses is becoming a huge problem on social media. Even the individual groups for these conditions are become sick of the trend of pushing them all as co-diagnosis. One example from the ME/CFS forums sampling the frustration with how people incorrectly self-diagnosing with all of these conditions as a cluster is becoming a problem for each individual condition: https://www.s4me.info/threads/problems-arising-for-pwme-from...
This should be flagged away as it's both misinformation and a document serving as a lead gen for their training services based on misinformation (see the link at the bottom of the document)
I'm about to head out for lunch so this will have to be a shorter post but I'll touch on some of the major points.
* The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane. Most people are using values from older studies so they think it is much rarer than it actual is.
* I don't see a strong distinction between hEDS and HSD, diagnosis appears to be mainly a matter of severity but due to that being rather random there isn't a clear distinction. * The TNXB gene is overlooked because too many people have SNPs here and the assumption of the rarity of hEDS rules it out. It seems that number and type of TNXB SNPs as well as other RCCX genes also govern severity.
* If you look at long covid information the proportion of those who have hEDS/HSD is far higher than it should be. Dr Jessica Eccles has great research on this, I think the obvious explanation here is far more people have hEDS/HSD than have been diagnosed with it, and these conditions create a strong predisposition to ME/CFS/LongCovid.
* Average time to diagnosis is 20 years from the onset of symptoms, which is insane, but it gets worse when you consider that the vast majority with it never get diagnosed, so the average is really never.
I have a rather severe form of this and even I would have a hard time getting diagnosed with hEDS - I look too healthy. I've never been formally diagnosed but have a Whole Genome Sequence with the expected TNXB SNPs. Things that I've tried and worked;
* Low Dose Naltrexone (LDN) is a great start (mentioned here in the pdf)
* Supplemental T3 as sub-clinical hypothyroidism is pretty common
* I think a combination of week ligands like Modafinil and Amitriptyline can really help with dysautonomia
* I take low dose of semiglutide and this seems to help with the auto-immune aspect
* I take Ipa/ModGRF(no dac), BPC157/TB5, and VIP
* High dose TUDCA and high dose DIM
* Supplemental testosterone
* Zero sugar diet, including no fruit. I basically subsist on kale salads and steak.
It's a tough thing but from what I have seen, pursuing the diagnoses on this list makes life worse for the vast majority of people who choose to do so. There is a rapidly expanding cottage industry of charlatans who will diagnose and treat these things, and others who post about them online and feed the cycle. I'll admit spectrum bias, since I see the ones who come to the ER with concern about these issues and they skew hard in a certain direction but this is overall not a good thing.
Anybody have a more non-medical-background summary?
You should try harder to treat autistic people like people, instead of mocking and dismissing things you can't be bothered to try understanding. Comorbidity is a very real thing. Autistic people do have high incidence of comorbid conditions. Your narrow view of the world does not represent universal truth. Hypochondria is common among autistic people, because they commonly have real issues. When everyone refuses to take you seriously, you have to find your own answers. You're the problem here, bud.
A habit of moving the attention in a way that is possibly unhealthy, unuseful and probably discordant to what's common and normal.
One solution is to change that habit with drugs or therapy.
Another solution is to gain a greater understanding of your attention. Thus gaining a new freedom to move your attention in whatever way, rather than suffering the governance of habit.
The meditation people (Buddhists etc) study attention. They have some impressive methods and such. It's worth looking.