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@Michiel Tack No, hEDS doesn’t propose hypermobility as an explanation for anything (except, like, pain and subluxation). Read some papers that I posted on other threads. I can’t explain again every time this comes up. All form of EDS have some kind of hypermobility, including vascular and...

Thread here https://www.s4me.info/threads/we-should-have-a-rule-against-bullying-via-suggesting-other-patients’-diagnoses-are-invalid.10495/

And then we start from scratch the next day, or week, or month.

Usually a forum has anti-bullying rules, and saying a diagnosis is invalid (when it’s a diagnosis that patients find useful and not off putting) is probably fairly considered bullying. Maybe that should go in the moderation forum. I am so tired of making these same points.

Well, except rheumatologists who for some reason decide to use Beighton criteria alone. Not an actual specialist, mind you, or they’d know that Beighton is just a criterion that helps make up Brighton, But I sort of doubt that if someone meets Beighton, they wouldn’t have other symptoms like GI...

indeed, ME research could learn a lot from stratification strategies of EDS research.

Are you sure about that? How would you feel if you went to an Ehlers Danlos (EDS) board and they were saying that ME was a vague, unaccountable diagnosis and while the people were likely ill with something, they didn’t have ME because there’s no such thing. Certainly they can find more than a...

I think it’s possible to be nuanced enough to criticize wastebasket usages and vexatious diagnoses without having to allow insults to diagnoses that other patients find useful. Edit: You will of course understand I am not defending diagnoses patients don’t find useful, such as MUS, but other...

Too much information for me to look at right now but perhaps the 25% ME Group has something. https://25megroup.org/factsheets-and-leaflets Or InvestInME http://www.investinme.org/infocentre.shtml Or ME Association factsheet saying severe and poor function...

Would this help? NYS page on ME talking about accommodations including wheelchairs? https://www.health.ny.gov/diseases/conditions/me-cfs/ Workwell letter about how exercise and GET are detrimental...

I like to have an idea of something before I ask my doctor, too, so I don’t ask unnecessary questions and so I know if they’re saying something silly. ALP is thought of as increasing slightly with aging. Doctors are in many cases not very concerned about low levels of things (and many resources...

Hi how are you doing now? Was the hematologist any help? Sorry I wasn’t more helpful before; I just don’t know anything I haven’t already posted here and I wasn’t able to repost at that time. Osteomalacia was my idea for me about how to tie together Vitamin D, high ALP, and some other signs and...

There’s other things that can be done in the U.S., though. I have only ever seen Salvation Army collect outside of shops without selling something, and only at Christmas time (Girl Scout sell cookies; school sports teams will be selling something, too) ... but sometimes it’s just a rubber...

Additionally, many autistic people don't see their autism as a disease. If they have GI problems, they want medical treatment for that. But their autism is just a different way of thinking, like being an introvert or extrovert. They want services and supports to figure out how to navigate a...

I have been saying this everywhere for, idk, years. Good others are, too. More voices means more chances they listen.

Pretty sure if people post here to trash other diagnoses (as happens regularly on a variety of threads), the others won't want to work with us even on neglected illness issues.

If I figure that out, I will post about it. =D I have a worn out earbud with 4 sizes of silicon ear pieces (most come with three) and the smallest one is small enough that I can wear that for a while. My sister bought it for me so I don’t have the ordering information, but if I find it and they...

In my memory, he used to support ME as being a “real” and important disease but refused to believe that exercise could be not a good recommendation. More on him and ME here: http://www.blogistan.co.uk/blog/mt.php/2013/01/01/simon-wessely-more-sinning-than-sinned-against

I have wanted to try this, but I am concerned the headphones would grip my head, causing pain (normal headphones do). So I have waited until it seemed realistic to try some in a store. Do other people have this head pain problem and what do they do about it re: headphones? Ear buds bother me...

Yes, not every person can do every therapy, and it would always have to be modified based on severity and possibly comorbidities. That being said, deep massage gives me PEM. A very careful massage helps my muscles not to stay cramped. Uncramping them does help for a while. Also they can do...