Another Post-Viral Diagnosis

Hip

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Is this true? Have computers been put up against doctors in controlled environments? I tried the 'Symptoma' you recommended earlier and it immediately came up with CFS at the top of the chart and POTS second. In my journey of 30+ doctors at some of the most respected institutions in America, not one doctor said 'sounds like CFS' even though I was already aware of the disease.
ME/CFS is not a good disease to test the competence of primary care doctors, since ME/CFS is targeted by corrupt insurance companies, who constantly work to paint ME/CFS as an "all in the mind" psychologically-caused condition. So there is dire politics involved with ME/CFS, that we do not see in other diseases.

As you know, these insurance companies work in cahoots with unscrupulous psychiatrists to paint ME/CFS as a psychosomatic. This then saves insurance companies a fortune, as they can withhold disability payments from patients. The same process of psychologization of long COVID has already begun, for the same financial reasons.

So it's the dreadful politics behind ME/CFS that cause the problem.

Doctors can generally only follow the education they have been given in medical school, and I have read ME/CFS is touched upon for only a few hours in a medical degree (just a few hours in the entire 5-year course of a medical degree). And in many cases, because of the corrupt work of these psychiatrists, medical students may be taught that the condition is psychologically-caused.

As a patient community, we are rightly upset and angry about the poor treatment ME/CFS gets from the medical profession; but primary care doctors are only the foot soldiers of the medical profession, and not the root cause of this problem.

The fault lies in the corruption of the higher levels of medical care management hierarchy. As we saw recently when NICE in the UK still tried to sneak in GET and CBT as official treatments for ME/CFS. You will always find some people in top management positions who are corrupted by money they receive from their insurance company paymasters.




Symptoma by the way is an exception to the rule regarding the quality and accuracy of computer diagnosis.

This study says:
Every seventh diagnosis is a misdiagnosis. Each year, 1.5 million lives could be saved worldwide with the correct diagnosis. Physicians have to consider over 20,000 diseases.

A study from Harvard University published in 2015 tested 19 symptom checkers and found them to be insufficient, with only 29-71% accuracy in diagnosis.

....

Most of the new symptom checkers demonstrated diagnostic accuracy rates within the previously established range, with the exception of Symptoma, which scored the right diagnosis in 82.2% of cases at the top of the list

So this is saying Symptoma gets the diagnosis right 82% of the time (the actual disease you have is placed at the top of Symptoma's list of suggestions 82% of the time).
 
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lenora

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I don't know about a lot of things, but I do know there are plenty of good doctors out there. Sure, we all have bad ones from time to time....but until research proves exactly what's going on, what do we expect out of doctors? They have to be guaranteed a certain amount of proof before anything can be done.

Insofar as antidepressants and neuroleptics go, I have no idea where I'd be if these hadn't been used. We're all guinea pigs when we enter the medical system, unless it's something already proven. Doctors can only do their best....the ones with empathy go many steps beyond that, but they aren't creators or destroyers; they aren't gods.

I find the best I can do is hope the person I'm seeing can help me. I have never expected a guarantee b/c I knew that what I'm dealing is way beyond that. (That included the neurological illnesses that first attacked me, later it was also ME). I do know that I couldn't move without the use of certain medications and for them and the people who prescribed them, I'm most grateful. Later on these same meds became common to the use of helping our illness.

There is no excuse for a severe back-up in a doctor's office (OK, it can happen as an emergency once or twice over many years). However if one is kept for hours for an appt., then it's time to exit and find a new, more caring doctor. It annoys me no end to be kept waiting for more than an hour, especially these COVID days when you're reluctant to even read your own book. If a doctor is arrogant, then he deserves to be treated the same way. Try younger doctors, I think your experience may be somewhat different. Yours, Lenora.
 
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hapl808

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I don't know about a lot of things, but I do know there are plenty of good doctors out there.
I think there are plenty of smart and well meaning doctors out there. But they're only useful for the more commonly treated disorders, not ME/CFS. As for what I expect out of doctors - I want them to use their knowledge and communicate with me and together see if we can improve my situation. I have seen 30 or so doctors, and I have never really received that. I had a naturopath who would rx me some things I wanted to try, but their own ideas were limited and not very helpful. Otherwise they see how crippled I am, and it doesn't fit their idea of ME/CFS, so they just write me off as a peculiar case.

Unless you already know what you want and have, each doctors seems to be its own kind of hammer. This one does hormone treatments, that one everything is lyme, the other one sees CIRS everywhere, and so on. It's exhausting (and extremely expensive) to find each hammer for whatever nail you're testing. And if you're already severe, the amount of 'testing' you can handle can be extremely limited. Nowadays the smallest tests can crash me, so I wasted years of testing the 'wrong' things and getting limited treatment options. I've done abx and Chinese herbs and such, but never antivirals. I've considered Oxymatrine or others, but it would be nice to work with someone who doesn't just have availability every 4 months for $400 for a few minutes or something.
 

lenora

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Sorry, @hapl808. I hate to hear of people having improper attention paid to them in a doctor's office. From the top down, you want to start with a neurologist, then tfy a rheumatologist who specializes in FM for example. Your Internist is usually a great source of help, especially when opinions are all over the place. Neurologists rule out major neurological illnesses and will often recognize an illness in someone that others have missed. They're at the top of the medical hierarchy and are worthwhile for ruling out other neurological illnesses.

Yes, you may have to make a few trips in the beginning, but that lessens with time. We now have the addition of Pain Specialists and they cab be rather difficult to access, depending upon where you live. Most won't see you unless you're referred to and seen by a psychiatrist who can specialize in pinning down the area of the brain pain is coming form, it's causes and whether or not there are any obvious mental problems. And yes, there sometimes are. Sit in a Pain Specialist's office and try to figure out who's on the up and up and who is trying to make it look that way. It's just not easy....and that's why you'll go through a phalanx of personnel before you ever even reach the Dr.

Injections can be very helpful, or other types of meds, some addictive, but that's discussed with you before a decision is made. Implants are a good thing for a lot of people, but ask what the success rate is and for how long. My understanding is that under present guidelines they only last slightly less than a year and the pain then returns in full force. This will improve, but over how long, I have no idea. The spinal cord is responsible for the growth of a lot of scar tissue (if you've had surgery), thus it's important to factor in how much more difficult that would be to control the pain. Right now, I'm off everything and hope to stay that way. Yes, I'm in pain, but I really don't want the govt. to snatch my meds away at any time without much in the way of fair warning. I was lucky that I wasn't addicted to say, Fentanyl, but I'll not be used a second time. You really can't ask enough questions when it comes to your health.

I can only hope that most of you will find kind doctors who will try their very bet to help you. This other business just isn't fair. Yours, Lenora.
 

BrightCandle

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I think there are plenty of smart and well meaning doctors out there.
This matches my experience too, I do not find doctors to be anything but a hammer to clonk a nail I know I want to try clonking, I tried the other way and it hasn't worked. I am now at 169 appointments on this issue across a range of GPs and specialists and I haven't found one remotely as knowledgeable as myself on this condition let alone willing to help in some way. They must exist because people tell us they do but they are, at least to me, exceptionally rare.
 

hapl808

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Sorry, @hapl808. I hate to hear of people having improper attention paid to them in a doctor's office. From the top down, you want to start with a neurologist, then tfy a rheumatologist who specializes in FM for example. Your Internist is usually a great source of help, especially when opinions are all over the place. Neurologists rule out major neurological illnesses and will often recognize an illness in someone that others have missed. They're at the top of the medical hierarchy and are worthwhile for ruling out other neurological illnesses.
I saw two general neurologists (one the head of a department at a major US hospital), a neuromuscular specialist who did genetic testing to look for rare muscular diseases, a general rheumatologist, a rheumatologist who specialized in FM (who damaged me permanently with his misdiagnoses and examinations), four ID specialists, and on and on.

They must exist because people tell us they do but they are, at least to me, exceptionally rare.
That's how I feel. I've seen people with great resumes and pedigrees, but they've been useless at best and incredibly damaging at worst. I would unquestionably be in better shape if I saw zero doctors and just rested a bit.
 

lenora

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Really, when all is said and done, your best chance for help lies in a clinic that specializes in CFS/ME/FM....there are some, but they aren't going to be found on your local corner.

I can tell you that the Mayo Clinic in AZ is of absolutely no use when it comes to neurological problems...so rule that one out immediately. Others are more specialized and there are a few in FL (which I haven't been to....my neurologist has helped me as much as anyone can at this point). So many of the specialists I knew about have retired...whether other knowledgeable people have picked up their baton I can't say. Does anyone on here have a list of those who can and are willing to help?

You can return to your local Dr. for care. Studies are good things to try to get into....no guarantees, but then no one does that. How can they when we're still looking for that elusive biomarker?

I know how frustrating and close to tears it can leave one. I don't know how I happened to find this gem, but I did.

Again: Anyone who has the names of present working clinics taking patients, please list them for the benefit of all of us. You would be helping immensely. I wish everyone better health. Yours, Lenora.
 
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Came back for a second bite of the apple with what I'm hoping is slightly better cognitive function ....
Hopefully he hasn't completely lied and at least aknowldeges that I have a possible post-viral condition on his report instead of just saying I'm just depressed (this would be music to the NHS's ears I'm sure). Regardless of what he had to say, I'll keep looking for answers and hopefully get some real medical evidence that can validate my symptoms to doctors.
The thing about your Dr not totally lying is a very big hope, at least in my experience.

And whether you can get real evidence or not, this is the place for answers and the saller 10% solutions that can add up over time to considerable improvements in various different aspects of wht ails us. At least it's proven so for me, and I hope it will for you, too. Although I wouldnt evaluate that based on my status today. Weary, brain-deadish, just fighting thru ....
The doctor I seen is calling it post-viral fatigue, but don't get how this can still be a diagnosis when you've had it for over 5 years. After 6 months is generally when a diagnosis of ME/CFS is made.
Yeah, it's admirable the way Drs don't allow themselves to be hampered by anything as limiting as logic. Or thoughtful consideration.
By the way, i hate MDs and the system so much i cant even say it anymore.
Oh honey, I soooooooooooooooooo totally hear that. It's wearying to have to confront the bottomless disinterest, ineptness, and even open contempt, along with a system carefully and precisely designed to defeat us at every turn, in every way, at every level, for any issue we may bring to it for help.


If they brought that brilliance of design to something useful, none of us would be posting here ...
guidelines for positive diagnosis and just stick a label on you for something they can't treat, its mighty convenient. There is a reason why medical negligence payouts are climbing fast in the UK.
The Mafia must stand in absolute awe of our medical system over here, with its careful crafting to defeat even the most obvious malpractice suits. Drs dont fear the legal system as its been set up relevant to med mal, they laugh at it and move on to their next vict .... uh, patient.


There's an old medical axiom, "Drs dont correct their mistakes, they just bury them ...."
I'm doing poorly lately so my general outlook is accordingly bleak.
I know exactly what you mean. I've found that for me at least, the only way to deal with horrible emotional compression and the attendnt depression and grim greyness of spirit is just to grit my teeth, find smething to be grateful for, grab the reins, and ride that little bustard out til it drops from exhaustion ....
 
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Personally I am in awe of doctors. I see every diagnosis they make as almost a mini work of genius, especially the more difficult diagnoses.
my husband picked up a pathogenic bacteria walking on a very remote beach. He went to numerous doctors and nobody could diagnosis it until he finally encountered the Emergency Room Doctor who surfs and sees surfers who go to beaches.

(do not walk on beaches barefoot)
 
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Gotta problem? Need an answer? Just ask the google.

What should GPs do to stay on top of medical research?

the Answer is: Drumroll. (bold came with the quote)

"Physicians need to develop their own goals for staying current, systematically and periodically search the literature for high-quality material relevant to the topics on their agendas, become facile with critical appraisal of the literature, and schedule time for reading."


Issue 1- how to get on Their Agenda
 
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Came back for a second bite of the apple with what I'm hoping is slightly better cognitive function ....

The thing about your Dr not totally lying is a very big hope, at least in my experience.

And whether you can get real evidence or not, this is the place for answers and the saller 10% solutions that can add up over time to considerable improvements in various different aspects of wht ails us. At least it's proven so for me, and I hope it will for you, too. Although I wouldnt evaluate that based on my status today. Weary, brain-deadish, just fighting thru ....

Yeah, it's admirable the way Drs don't allow themselves to be hampered by anything as limiting as logic. Or thoughtful consideration.
Yep. I don't think my neurologist is quite lying I would say and I expect he was probably just following the same NHS guidelines by offering CBT/antidepressants. He did ask all the right questions related to ME/CFS (asked about PEM, any sensitivities/intolerences, pains, muscle issues etc, non of which I had of course) and it seemed at least that he did want to find out I had actual ME, especially after a previous doctor gave me this as a label. So that's been ticked off the list, but still seems to think that it is something along the lines of post-viral fatigue.

He could have been more understanding with my situation though, telling a young person who once had a career ahead (as a sound engineer, music producer and playing in bands) to just "forget about your future" is a hell of a lot easier said than done. And that my illness will get better after 5 years of continuous perminant degradation is just trying to give me false hope, along with false despair at the same time. I've still not been given any definitive diagnosis and vague assumptions are just being made that it's a post-viral fatigue related illness. And just accepting a worsening condition like mine is like trying to accept dying on slowly sinking ship, instead of trying to find or build a life preserver.

I'm still hopeful that I'll find answers even after 5 years. Those answers will only come if I push hard enough to get the right testing and investigations I need to find an objective problem. Just asking people what they think theoretically could be causing my symptoms, and trying stuff accordingly has gotten me nowhere, and that's mostly all I've been doing for 5 years. Getting an EEG and PET scan is now at the top of my priority list. I'm also going to give the DZNE research group in Germany a call tomorrow and see if they can assist me taking my investigations further, since I do reckon that I have some autoimmune disorder in my brain, resulting in cognitive decline.

I just got a recent family inherritance too, so I intend to spent that money doing everything I can to investigate this. So if I were to travel to another country to get away from the broken medical system they have here, then so be it.
 
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lenora

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Hi @SeanQHX1.....Have you had a series of MRI's (from your brain to the end of the spinal column)? These should be with and without contrast. Take the CD's with you to each and every appointment, ask the doctor to read them himself (as there are so many diagnoses that one Dr. may recognize & another may not). The report from the radiologist is often good, after all they are specialists, but in my case I have two relatively rare neurological illnesses (or at least they were then....35+ yrs. ago) but the radiologist missed them. See how important it is to have as many people as possible read them?

The contrast is important, unless of course you're allergic to the dye. Also a good machine is a must. A hospital will usually have the most up to date.

It's true that in some cases ME will change form over the years.
The main neurologist who has treated me for all these years is from CA but worked in a Third World Country and recognized my problem. Medications have helped me with lessening the pain and I'm thankful for them. Note, that it's not totally gone. Nerve damage is a bad business to deal with.

It's so difficult to get an answer for an elusive problem....it really is. The head of a particular department is no more likely than any neurologist to recognize a condition. It just depends upon whether the Dr. has seen or heard of a patient with these problems. Also, we have to invest more heavily in research....b/c until a biomarker is actually discovered, no one is going to take this seriously. An empathetic Dr. recognizes that his patient is in distress. A lot of them will spend hours researching and the really good ones, attend conferences that profile unknown illnesses, syndromes, diseases. There are some who specialize in our problems. I almost think ME is easier to diagnose if a person also has FM.

I wish you well....and no, you don't need to read about a lot of symptoms b/c they can just drive you a little crazy after a time. I can only tell you to remain open to a possibility and be hopeful. Yours, Lenora.
 
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It seems like this operates at the level of the individual physician.
No, it actually operates better at the corporate or association level. They're always looking for money and it would be nice if it all didnt come from BigPharm. Donating at the physicain level would be defined as bribery.
Is any continuing education required to maintain a medical license I wonder?
Yes. every licensed physician has to complete around 50 or 60 hours of 'approved' CME every 2 years before their license renewal date .... CME is Continuing Medical Education .... I'm assuming the 'approved' part is decided by the state's medical licensing board, and probably offers multiple options depending on the Drs interests and specialty .... and I'm betting that BigPharm offers 'brush-up' courses in places like the Bahamas, Hawaii, maybe the Canaries ....
 

lenora

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Yes, continuing education is required unless there is a special reason for it (i.e. illness, death in a family) but I think you'll find that's true in most states. At least I hope so. Yours, Lenora.