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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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I think I read that Dr. Avindra Nath now wants to dedicate herself to research on Long Covid........I hope she doesn't return in 5-6 years with the new study. I don't know if the two pathologies are similar, but regarding ME I'm practically sure that it is a persistent and contagious disease because in addition to seeing many of my symptoms in family and friends (unfortunately unprovable) I also saw those symptoms manifested in people who I only met 20 years after the onset of my ME and exclusively in places other than my home....... Therefore we should urge ME associations and research to deepen Nath's study on ME.
I think having this disease makes us more likely to see similar symptoms in other people and ascribe them to ME, even though the causes of their symptoms are not due to ME. It also makes us aware when people who do have ME describe their symptoms, whereas if we didn't have ME, their descriptions of symptoms might not have even registered on our minds. The awareness of ME could be considered contagious.but regarding ME I'm practically sure that it is a persistent and contagious disease because in addition to seeing many of my symptoms in family and friends (unfortunately unprovable)
Eds/ autistic like traits, are so common in m.e. patients no matter how under the radar they appear
I feel your pain quite literally.I generally have observed that over time, we have weaker and weaker tissue, connective tissue, etc.
so I view it as a type of facultative EDS. I was not remotely autistic, but I now feel that way.
I was standing on both of ankles, in a photograph when I was two. I have a defective spine/ I likely have tethered cord and over time, many back problems lasting a lifetime, none of them fixable, really.
The subcutaneous fat bundles have broken down, no fingerprints, I cannot really walk around barefoot.
the whole body gets affected gradually (in my case)
Neck unstable. I know my neck is unstable.
So all this has happened and nobody cares.
The benzos thing drives me insane.@Rufous McKinney Hey Rufous I’m so sorry to hear that and unfortunately it’s all too familiar. I too have all sorts of subclinical muscle, connective tissue and psych (I would say autistic but I’m not even sure what that would be like) problems that no doctor ever agrees has any specific dx. I tell them I have CFS and that’s as far as it ever goes. It’s not EDS, it’s not Marfan, it’s not myopathy/neuropathy/dystrophy, the only doctors that jump at the opportunity to label it are shrinks. Can’t get any serious pain medication, can’t get any benzos, all under the guise of doing no harm and yet day in and day out I suffer from being underdiagnosed and under treated. Even when I bring ideas to the doctors who otherwise would be doing nothing they more often than not say ‘we don’t know enough or have enough data to be comfortable doing such and such.’ And when I’ve resorted to self medication in the past I’ve been sent to rehabs. The last two medications I’ve been given by shrinks, VRAYLAR and regular dose Abilify, both gave me movement disorder problems, something that was never even mentioned by the doctors as being a possibility. Then they treat benzos as if they are fentanyl pills. Benzos are the only drug I’ve found out of 100s that reliably gives me functionality back and yet somehow that’s a bad thing because of dependency fears. Dependency that when I was sent to rehab to deal with was adequately treated with phenobarbital. It wasn’t a huge deal to do that even after 3-4 years of daily use. Anyways, It’s truly a hellish unbelievable life that we are expected to live. /rant over sorry
Was helpful tho..but okThis thread is going off topic.
Glad you feel seen dude@Oliver3 That was so well said, and so EXACTLY reminiscent of my experience, that I think I’m going to read that to my shrink when I see him next week. He has told me two months in a row that he’s not completely opposed to prescribing them to me but that there needs to be a future lecture first. I am hoping to get my experience across without having them immediately throw up their usual disregard of what I say as if it’s all ego and bluster.
I was put on phenobarbital around the age of seven, and years later, I asked my parents and they could not explain why any of that happened. Like for how long, I don't know that either. Its just this odd childhood thing.Dependency that when I was sent to rehab to deal with was adequately treated with phenobarbital.
thank you, you are very kind.Hey Rufous I’m so sorry to hear that and unfortunately it’s all too familiar. I too have all sorts of subclinical muscle, connective tissue and psych (I would say autistic but I’m not even sure what that would be like) problems that no doctor ever agrees has any specific dx.
nanny stateI would be happy to sign a contract to say this is my responsibility.
During this time I had problems and I didn't want to give a short answer....... However you spoke like those doctors who do not recognize the existence of ME, for them those symptoms are common...I think having this disease makes us more likely to see similar symptoms in other people and ascribe them to ME, even though the causes of their symptoms are not due to ME. It also makes us aware when people who do have ME describe their symptoms, whereas if we didn't have ME, their descriptions of symptoms might not have even registered on our minds. The awareness of ME could be considered contagious.