A Boy, His Brain, and a Decades-Long Medical Controversy

Alvin2

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A Boy, His Brain, and a Decades-Long Medical Controversy
No one could deny that Timothy was sick. But when doctors can’t agree on the cause of an illness, what happens to the patients trapped in limbo?

TIMOTHY WAS 10 years old when his personality changed overnight. A concussion during a family ski trip in December 2016 left him unsteady on his feet, but that was just the first sign something was wrong. The strawberry-blond boy who played on the chess team and looked forward to Mandarin lessons became withdrawn, obsessive, and suicidal. Back home in Marin County, California, he said “bad men” had surrounded his family’s house and were trying to get him.
The boy’s doctors were stumped. Concussions can cause mood changes, but not like this. They ran test after test, searching for a diagnosis. When Timothy’s parents wrestled him into the car to take him to various clinics—for brain scans, blood draws, immunological workups—he told them he wanted to jump out onto the highway.
The tests kept coming back normal. Neurologists referred him to psychiatrists. Psychiatrists referred him back to neurologists. Pediatricians recommended therapists. Therapists suggested psychologists. In late March, with Timothy in a deepening depression, his parents and uncle made a plan: They would rent a car with no back doors, sedate him with Benadryl, and drive him overnight to the child psychiatric unit at UCLA.

The doctors prescribed Lexapro, an antidepressant, and steadily upped the dose. But the boy only became more agitated. It was as if an alien had crept into his body and stolen the real Timothy, Rita recalls. His intrusive thoughts suggested a diagnosis of obsessive-compulsive disorder; his mood changes pointed to a depressive disorder. Rita says one psychiatrist told her, “To be honest, he doesn’t really fit any category we have.”
A couple of days after returning to Marin, the family met with a chiropractor in San Francisco who specialized in the treatment of neurological disorders. Chiropractors are not medical doctors, but by this point Rita and John were ready to speak with any professional who might be able to help. Rita mentioned the rash, and the chiropractor seemed to confirm her research: Timothy, he said, had a subset of PANS called pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections, or PANDAS. If the bacteria were still there, circulating in the boy’s bloodstream, the first step toward alleviating his symptoms was to knock them out.
https://www.wired.com/story/a-boy-h...medical-controversy/?utm_source=pocket-newtab
 

Pyrrhus

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If you think ME is a stigmatized, misunderstood condition- it's not nearly as stigmatized as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is.

Here in the U.S., hospitals occasionally remove children with PANS/PANDAS from custody of their parents, because doctors believe that it is a fake disease made up by parents to gain attention for themselves.

EDIT: replaced "routine practice" with "occasionally"
 
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Here in the U.S., it is routine practice to remove children with PANS/PANDAS from custody of their parents, because doctors believe that it is a fake disease made up by parents to gain attention for themselves.
they use the term "Misdirecting" (their symptoms arise from misdirection of the immune system).

What is misdirecting them?

And after these children are removed- so what happened then?

If this is routine, what is the routine result? cured?
 
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Here in the U.S., it is routine practice to remove children with PANS/PANDAS from custody of their parents, because doctors believe that it is a fake disease made up by parents to gain attention for themselves.
reading more about it at another random link....they act like suddenly your 7 year old is OCD.

these kids are being affected by infectious agents. It doesn't sound fake at all.

https://childmind.org/guide/parents-guide-to-pans-and-pandas/

they seem to suggest- lots of antiobiotics (dangerous)

IVIG....
 

Pyrrhus

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Yeah, PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is quite similar to ME in that they are both neuroimmune diseases that are triggered by infections, but the symptoms turn out to be completely different...

childmind.org said:
But there is another kind of OCD in which full-blown symptoms come on virtually overnight, accompanied by other symptoms including tics, eating restriction, rage, depression and even suicidality — in children as young as three or four.
[...]
When children suddenly develop full-blown OCD and these associated symptoms, it may be what’s called PANS — pediatric acute-onset neuropsychiatric syndrome. It’s called “acute onset” because the behavior changes come on suddenly, reaching full-scale intensity within 24 to 48 hours. It’s a syndrome because there are quite a few other symptoms that appear alongside the intense anxiety.

If the onset of these symptoms is linked to a strep infection, it’s called PANDAS — pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections — which is a subgroup of PANS. Some 86 percent of acute onset OCD cases are linked to strep. Children especially at risk are those who have what doctors call “occult” or hidden strep infections — that is, children who can be “carriers” of the infection but don’t get symptoms themselves, and hence don’t get treatment.
 
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If you think ME is a stigmatized, misunderstood condition- it's not nearly as stigmatized as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is.

Here in the U.S., it is routine practice to remove children with PANS/PANDAS from custody of their parents, because doctors believe that it is a fake disease made up by parents to gain attention for themselves.
Are you ****ing kidding me? This makes me so upset. Separating children. My god. Is it really routine? Where did you hear this?

Yeah, PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is quite similar to ME in that they are both neuroimmune diseases that are triggered by infections, but the symptoms turn out to be completely different...
I don't think they're always different in symptoms. Especially if thinking about categories of symptoms that occur in ME, these symptoms would fit into a mental and emotional changes category. I don't think acute ocd onset is different than acute onset of other neurological symptoms like loss of cognitive, emotional, and social function, intense anxiety, derealization, paranoia, and others, after a virus and these happen in some people with ME too, with different severities. I would bet sometimes it includes ocd. For me I got ocd previously as a teen (and I'm investigating right now whether it was for this PANS reason or another reason), but ocd got worse after my virus ME onset 8 years ago and continued to get much worse. It often flares when other cognitive issues are flaring. I think the regions and chemicals and all that stuff in the brain would differ for different manifestations of post viral brain issues, but I don't see ocd as a totally different manifestation as ones that also can show up with ME, if you get what I'm saying.

The acute of these symptoms happens sometimes in traditionally described viral and autoimmune encephalitis. But when ME has a viral onset, it IS viral encephalitis, probably at least most of the time (with the evidence of neuroinflammation being seen). That is how I've come to understand it. Because viral encephlitis means brain inflammation caused by a virus. And then autoimmune encephalitis means brain inflammation from something autoimmune, which can happen after a virus too and is a question with some people with ME. So I think the term encephalitis could be applied to many of us or all of us. I think it's a terminology thing and a science discovery thing, where as more evidence piles up for brain inflammation in ME, it'll just be a choice that might become popular or institutionalized to use the term with ME. I hope so.

I think it's just that viruses and some autoimmunity, and other infections, and toxins, and everything, haha (not really everything), can do lots of things in the brain and rest of the nervous system, so that there's so many possible neurological and neuroimmune manifestations that play out. And we just are discovering so much about neurology and the immune system in general it seems. It feels like so much can change with medical paradigms and categories and terminology coming up in the future because so much has been happening in recent years.

I actually hate the term neuropsychiatric mostly because of the stigma of what's been considered psychiatric conditions and mental illness. The distinction doesn't make sense for what gets called neuropsychiatric and what gets called just neurological doesn't and I think it's outdated. I think psychiatry and neurology have had many changes since their inception but I think when psychiatry was created it was with a completely different understanding to what we have now and it should be eliminated and merged into neurology. It would legitimize all conditions previously considered to be "just" psychiatric, and create more investigation and treatment, like seen with PANS here. It seems like this is happening but slow and in spots, like the microbiomes role in mood for example. If all the new understandings and science resulted in a category change, of merging or eliminating the field of psychiatry, we'd be better for it. It would help speed up psychological and psychiatric problems being legitimized as things that need medical investigation, and quicker change the paradigm that allows people to be dismissed as having "psychological problems".

The Cunningham panel is used to test for certain antibodies associated with pans and pandas, but there are only five of them, just from whatever showed up most often jn the tests Dr Cunningham did with kids with pans when he created the panel, so it's not inclusive I believe. Because I don't think enough wide ranging antibody studies have been done showing how common those antibodies are over others in kids. It's not just kids who can have those particular antibodies after an infection though, and not just those with ocd. Two of them are dopamine antibodies. I know @Hoosierfans tested positive for this panel and it was used to help diagnose autoimmune encephalitis, and they told me ocd wasn't part of it for them. With my teenage ocd onset and with the acute onset symptoms I had 8 years ago that made ocd worse too, and having a positive ANA afterwards too, I want to know if I have some of these antibodies, and if they would still show up now after years and after not having an ANA anymore for a few years. I've just taken the test and awaiting to see if I do.

@crypt0cu1t I looked over your story today as we have some symptoms that are the same (was your derealization an acute onset?) or ones that used to be worse for me in the past and I wanted to see how your treatment was going. I'm beginning to want to find others stories that have similar neurological symptoms to mine happen acutely. Do you have anything to add about these topics? You've done a lot of investigation on these issues. Was your Cunningham panel positive?
 
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From a presentation by Columbia Professor Dritan Agalliu:
Does that stand for basal ganglia encephalitis? That makes sense. I wonder why so many things are thought of as swelling though or inflammation. I wonder if this is ever thrown around as a blanket term. Or if really the associations are correct reflections of studies of inflammatory markers or pictures of swelling, and not thrown around as a catch all. My sense is that it is thrown around as a catch all sometimes though and I think wait how do we know there's inflammation? I think I'm confused on what inflammation actually means. Does it always mean some swelling? Do inflammatory markers like prostaglandin always create actual physical swelling, even if minute? I've heard of it also meaning hot and destructive. Does inflammation maybe lump together processes that aren't sometimes actual swelling?

I'll read about that model above more because I'm very interested, and see why it's being called inflammation in this case, but I was talking about in general.
 
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crypt0cu1t

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Are you ****ing kidding me? This makes me so upset. Separating children. My god. Is it really routine? Where did you hear this?


I don't think they're always different in symptoms. Especially if thinking about categories of symptoms that occur in ME, these symptoms would fit into a mental and emotional changes category. I don't think acute ocd onset is different than acute onset of other neurological symptoms like loss of cognitive, emotional, and social function, intense anxiety, derealization, paranoia, and others, after a virus and these happen in some people with ME too, with different severities. I would bet sometimes it includes ocd. For me I got ocd previously as a teen (and I'm investigating right now whether it was for this PANS reason or another reason), but ocd got worse after my virus ME onset 8 years ago and continued to get much worse. It often flares when other cognitive issues are flaring. I think the regions and chemicals and all that stuff in the brain would differ for different manifestations of post viral brain issues, but I don't see ocd as a totally different manifestation as ones that also can show up with ME, if you get what I'm saying.

The acute of these symptoms happens sometimes in traditionally described viral and autoimmune encephalitis. But when ME has a viral onset, it IS viral encephalitis, probably at least most of the time (with the evidence of neuroinflammation being seen). That is how I've come to understand it. Because viral encephlitis means brain inflammation caused by a virus. And then autoimmune encephalitis means brain inflammation from something autoimmune, which can happen after a virus too and is a question with some people with ME. So I think the term encephalitis could be applied to many of us or all of us. I think it's a terminology thing and a science discovery thing, where as more evidence piles up for brain inflammation in ME, it'll just be a choice that might become popular or institutionalized to use the term with ME. I hope so.

I think it's just that viruses and some autoimmunity, and other infections, and toxins, and everything, haha (not really everything), can do lots of things in the brain and rest of the nervous system, so that there's so many possible neurological and neuroimmune manifestations that play out. And we just are discovering so much about neurology and the immune system in general it seems. It feels like so much can change with medical paradigms and categories and terminology coming up in the future because so much has been happening in recent years.

I actually hate the term neuropsychiatric mostly because of the stigma of what's been considered psychiatric conditions and mental illness. The distinction doesn't make sense for what gets called neuropsychiatric and what gets called just neurological doesn't and I think it's outdated. I think psychiatry and neurology have had many changes since their inception but I think when psychiatry was created it was with a completely different understanding to what we have now and it should be eliminated and merged into neurology. It would legitimize all conditions previously considered to be "just" psychiatric, and create more investigation and treatment, like seen with PANS here. It seems like this is happening but slow and in spots, like the microbiomes role in mood for example. If all the new understandings and science resulted in a category change, of merging or eliminating the field of psychiatry, we'd be better for it. It would help speed up psychological and psychiatric problems being legitimized as things that need medical investigation, and quicker change the paradigm that allows people to be dismissed as having "psychological problems".

The Cunningham panel is used to test for certain antibodies associated with pans and pandas, but there are only five of them, just from whatever showed up most often jn the tests Dr Cunningham did with kids with pans when he created the panel, so it's not inclusive I believe. Because I don't think enough wide ranging antibody studies have been done showing how common those antibodies are over others in kids. It's not just kids who can have those particular antibodies after an infection though, and not just those with ocd. Two of them are dopamine antibodies. I know @Hoosierfans tested positive for this panel and it was used to help diagnose autoimmune encephalitis, and they told me ocd wasn't part of it for them. With my teenage ocd onset and with the acute onset symptoms I had 8 years ago that made ocd worse too, and having a positive ANA afterwards too, I want to know if I have some of these antibodies, and if they would still show up now after years and after not having an ANA anymore for a few years. I've just taken the test and awaiting to see if I do.

@crypt0cu1t I looked over your story today as we have some symptoms that are the same (was your derealization an acute onset?) or ones that used to be worse for me in the past and I wanted to see how your treatment was going. I'm beginning to want to find others stories that have similar neurological symptoms to mine happen acutely. Do you have anything to add about these topics? You've done a lot of investigation on these issues. Was your Cunningham panel positive?
I had random episodes of symptoms that would wax and wane from the time I was about 16, but I still was functioning at about a 9/10.

The severe Derealization, blurry/double vision and visual snow was an acute sudden onset for me. Do you have Derealization?
 
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I had random episodes of symptoms that would wax and wane from the time I was about 16, but I still was functioning at about a 9/10.

The severe Derealization, blurry/double vision and visual snow was an acute sudden onset for me. Do you have Derealization?
I don't know if I'd say I still have it. Sometimes. I'm more likely to feel some derealization when I have disorientation and blurred vision, which often happen without derealization added now. It was more regular and much worse for years, as were many of my other symptoms. Did those come on after a virus? Did you take the Cunningham panel? Hope you're doing better
 

Pyrrhus

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This makes me so upset. Separating children. My god. Is it really routine?
"Routine" probably wasn't the best word I could have used. There may be specific hospitals or specific doctors who routinely do this, but that doesn't mean it is routine throughout the U.S.

About ten years back, there was an outbreak of PANS in a town in upstate New York. The local doctor declared it was conversion disorder and contacted the press to announce his finding of an "outbreak" of conversion disorder. Never mind that the affected girls tested positive for Strep A, an infectious illness. Since conversion disorder is a psychiatric concept, he announced that the cluster of cases must be due to the fact that the girls used social media, and the conversion disorder must be spread over social media.

The media picked up on it immediately and headlines blared across the US about the new "Facebook disease" that teenage girls were spreading to each other. The New York Times ran a whole weekend section about the girls and how none of the affected girls had a close connection to their father, and were in need of attention, which probably triggered the conversion disorder that was spreading over social media. The whole affair would have been so very comical if it weren't so very tragic.

I actually hate the term neuropsychiatric mostly because of the stigma of what's been considered psychiatric conditions and mental illness.
Yeah, "neuropsychiatric" is a very problematic term for a number of reasons. First, it combines a scientific discipline (neurology) with a pseudoscientific discipline (psychiatry). And when you combine science and pseudoscience, the result is always pseudoscience. Second, if the mind is equivalent to the brain, then it's simply a redundant term and you should simply say "neurological". Third, what you said!

I don't think they're always different in symptoms. Especially if thinking about categories of symptoms that occur in ME, these symptoms would fit into a mental and emotional changes category. I don't think acute ocd onset is different than acute onset of other neurological symptoms like loss of cognitive, emotional, and social function, intense anxiety, derealization, paranoia, and others, after a virus and these happen in some people with ME too, with different severities.
I think the main differentiating symptom between PANS and ME are the uncontrolled limb movements, a symptom known as "chorea". This is when the legs or arms start flailing uncontrollably and the patient can not stop it from happening. Since this symptom can be directly witnessed by outsiders, unlike the OCD, outsiders see it as a defining symptom. The PANS community, however, seems to consider the OCD as the defining symptom.

Does that stand for basal ganglia encephalitis?
Yes the "BGE" in the diagram stands for "basal ganglia encephalitis".

I wonder why so many things are thought of as swelling though or inflammation. I wonder if this is ever thrown around as a blanket term. Or if really the associations are correct reflections of studies of inflammatory markers or pictures of swelling, and not thrown around as a catch all.
I think I'm confused on what inflammation actually means.
There are actually two types of inflammation in the brain:
  • neuroinflammation, which does not include swelling
  • classical Greco-Roman inflammation, which does include swelling
For more information see:
https://forums.phoenixrising.me/thr...n-in-me-subcortical-brain.80923/#post-2289868

Hope this helps.
 
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Alvin2

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"Routine" probably wasn't the best word I could have used. There may be specific hospitals or specific doctors who routinely do this, but that doesn't mean it is routine throughout the U.S.

About ten years back, there was an outbreak of PANS in a town in upstate New York. The local doctor declared it was conversion disorder and contacted the press to announce his finding of an "outbreak" of conversion disorder. Never mind that the affected girls tested positive for Strep A, an infectious illness. Since conversion disorder is a psychiatric concept, he announced that the cluster of cases must be due to the fact that the girls used social media, and the conversion disorder must be spread over social media.

The media picked up on it immediately and headlines blared across the US about the new "Facebook disease" that teenage girls were spreading to each other. The New York Times ran a whole weekend section about the girls and how none of the affected girls had a close connection to their father, and were in need of attention, which probably triggered the conversion disorder that was spreading over social media. The whole affair would have been so very comical if it weren't so very tragic.
Dear god.
By any chance do you have a link to share about this?
 
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About ten years back, there was an outbreak of PANS in a town in upstate New York.
Really? I lived in new york at that time, that was around the time I got sick with ME actually. Very far away from le roy though. I got ocd and tics as a teenager (still feels embarrassing to talk about tics even though they weren't severe). I remember in college my mom mentioned PANDAS to me, and I had had strep a lot as a kid but the idea kind of fell off somehow.

https://www.scientificamerican.com/...-cause-tourettes-like-symptoms-teenage-girls/
In the meantime, OCD expert Michael Jenike, a professor of psychiatry at Harvard Medical School, explains what PANS is and why it might account for the mysterious illness
What is PANDAS, and why is it now called PANS?
It's the sudden onset of a neuropsychiatric disorder: OCD, anorexia or psychosis, cognitive problems. Initially, PANDAS was associated with strep. It turns out that other infections like mycoplasma, certain viruses, Lyme disease—these also produce the same thing. So it's not necessarily associated with strep, and they changed the name to reflect that. Now it's any sudden-onset neuropsychiatric disease.

I've even seen it in old people after they have mono, they suddenly have OCD. I've seen a lot of it after Lyme disease now, too.

How can an infection cause a mental illness?
It's an autoimmune issue. Mady Hornig at Columbia University has a mouse model that shows how it works. They give strep to mice, then give them another agent that breaks down the blood–brain barrier, and that induces a neuropsychiatric syndrome: the mice have trouble running mazes, and so on. Then they purify the antibodies from those mice, inject them in another mouse that never had strep, and that mouse gets the neuropsychiatric symptoms, too. That shows it's the antibodies doing the damage.
Woah. I'm going to look at that. The mice had trouble running mazes, that speaks to cognitive problems that aren't just ocd from this strep induced autoimmunity. I'm really happy I'm seeing this now. I'm going to bring this up more than I'd planned to with a new immunologist next week. I want to find the antibodies responsible for my ongoing ocd if it is in fact autoimmune. If the Cunningham panel tests negative I'd have to try others. There's basal ganglia antibodies in england but not in the US that I've seen. I'll see if they know how to test for these. I already have an antibody for a weak blood brain barrier.

Can strep that happened earlier cause autoimmunity that develops later? That is what I will ask the immunologist. I don't think with PANS - which is any post infectious "neuropsychiatric" symptoms, and the professor defines it as any age - that it always has to be right away acute onset. Maybe I'm thinking that because of how we can get reactivated viruses and be symptomatic. Or aren't there other infections that cause autoimmunity later, isn't that what shingles is? I may have actually had an infection right before I developed it, I just don't think it always has to be right away.

[For more on Hornig's studies and the mechanism behind PANS, click here.]

The neurologist treating the Le Roy teenagers ruled out PANDAS early on. As he explained to WGRZ news in Buffalo, he nixed the idea because PANDAS is exceedingly rare and it mostly strikes kids under age 11.
I used to think it was very rare, too. I've work on OCD my whole career, and I couldn't figure out why no one could pin down what was going on with these kids who had had strep. Then the parents got me involved, and I learned a lot more. I now think PANS is extremely common—way, way more common than we thought. I get e-mails from parents every day whose kids have it. I don't think it is rare, is the bottom line.

The problem is, some doctors don't know about it, and some don't even think it exists, so it isn't diagnosed.

As for the age range, I think that the figure usually used is from around two or three years old up to age 14. I don't know why things would dramatically change so that teens could not be susceptible a couple years later. You don't rule people out because of age, especially when it is just a year or two. I see mono causing OCD in people who are 70 or 80.

The neurologist also said he ruled out PANDAS because only one of the girls had a throat infection.
Unless you have a really good medical history, it's easy to miss signs of many of these infections. Parents say no, the kid hasn't been sick, but maybe there was a fever one day that nobody could explain and they forgot about it. Often these infections are very subtle. If strep is in the sinuses, for instance, a throat culture might come back negative. But if you do the blood test and get the patient's antibodies, you can often figure out if there was some sort of infection without symptoms.
Any final thoughts about this case in Le Roy—the fact that all these teens came down with tics at the same time?
It's very weird. Usually I don't think you get outbreaks very often of things like PANS, where you have a whole group of kids get it. However, if there is strep or something going around a school, it's possible that this might happen more than you think. Some kids might stay home from school from awhile, maybe see psychiatrists in private—it's under the table, it doesn't get out there and people don't put it all together.
(Underline mine)

This must be what a Canadian show called Burden of Truth based it's first season on. It was a group of high school girls who got tics and cognitive problems and were diagnosed with conversion disorder. But in the show, it turned out to be toxins. It's a very good show.
 
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Pyrrhus

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Thanks @PisForPerseverance , that Scientific American article was very good!

Dear god.
By any chance do you have a link to share about this?
Here's the New York Times weekend magazine article:
https://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html

And here's a Huffington Post article:
https://www.huffpost.com/entry/hysteria-upstate-ny_n_1244142
 

Alvin2

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I don't think they're always different in symptoms. Especially if thinking about categories of symptoms that occur in ME, these symptoms would fit into a mental and emotional changes category. I don't think acute ocd onset is different than acute onset of other neurological symptoms like loss of cognitive, emotional, and social function, intense anxiety, derealization, paranoia, and others, after a virus and these happen in some people with ME too, with different severities.
...
I think the regions and chemicals and all that stuff in the brain would differ for different manifestations of post viral brain issues, but I don't see ocd as a totally different manifestation as ones that also can show up with ME, if you get what I'm saying.
I would agree that there is much overlap with ME/CFS and PANDAS, and the difference is just which symptoms are focused on or emphasized. ME/CFS may have all the same symptoms as PANDAS, and vice versa, but each disease focuses on different priorities. ME/CFS focuses on energy and PEM symptoms, which may be more severe or limiting in that group of patients. The PANDAS group may focus on emotional/cognitive behavior as that is a bigger complaint or limiting in that group, but who also has energy and PEM problems. There could also be a difference in presentation due to age groups and environement these diseases are generally identified/most commmonly found in: children in the developing years for social and educational developement vs middle age working women. Also, ME/CFS is more well known and for longer than PANDAS, so some patients may be miscategorized early and stuck with it. But there are enough differences in presentation and trigger that it makes sense to seperate these groups, but well worth applying science and knowledge of one disease to another.
 

hapl808

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Probably not a popular viewpoint for those who have been helped, but I think the pseudoscientific field of psychiatry has done way more damage than good throughout history and now. They become a catch-all for what medicine doesn't understand.

Conversion disorder, adjustment disorder, functional neurologic disorders. Literally diagnosed when there's no 'medical' explanation for symptoms. In other words, it's being a witch doctor. In 1800, they understood that if you broke your arm, there was something wrong. But if your arm was infected, maybe that was evil spirits. That was the best medicine of the time.

The field of neurosomatic bullshit is exactly the same as being a witch doctor in 1800. We should see if they float.