Doctors comments and your thoughts

[eastcoast12]

What's up everyone. As like all of you, I've been in and out of Drs with either a shrug of the shoulders or more confusion. So I've been diagnosed twice with cfs/me both by reputable doctors. The 1st was the chief of infectious disease at Winthrop university hospital and the second was from dr mazlin who's a cfs/me specialist.

Anyway I just came back from a new doc (neuro immune) and I told him I was diagnosed twice with cfs/me. He immediately said that's bullshit. So I was waiting for the usual but what he said kinda makes sense. Just wanted to get your opinions.
He was saying that cfs/me(cfs for now on) are just a grouping of symptoms with no known cause. It's a dead end diagnosis. Kinda like the docs throwing their hands up and saying I have no idea so cfs it is. His opinion is that like any physical symptoms the symptoms are real and caused by a real problem. Symptoms are a sign something is physically wrong not psychological but went on to say that he believes that people diagnosed with cfs have some deep underlying problems that most Drs won't check for like metabolic autoantibodies or some genetic/mitochondrial problem that hasn't been found.
I always thought that this just might be the case that's why it seems there are a bunch of subsets and stuff. but I feel like that would have been researched or something (sense it's cfs I guess it was probably never researched).
Any opinions?

 

[Esther12]

CFS/ME is a diagnosis that's a bit of a dead end and given to people likely to have lots of different health problems... but I'd be wary of doctors claiming that they can identify those health problems. It's easier to claim you can find the cause of people ill health than to actually do so. Who is the doctor? I'd be cautious.

 

[alex3619]

CFS is typically a wastebasket diagnosis, that you get to when a doctor is giving up. Its one step removed from "it must be psychological". Yet underlying the health issues are very real problems that can be tested for. Its the diagnosis that is problematic. This diagnosis is less problematic when given by an ME or CFS specialist, with the caveat that some CFS "specialists" are themselves problematic.

Even an ME diagnosis can be problematic. We just don't know enough. However it seems very likely that ME criteria, and the CCC ME/CFS criteria are really ME criteria, are far more reliable.

My best guess is that over 40% of CFS diagnoses are for other conditions that are missed. That might drop down to 5% or less for ME diagnoses. I get that figure because in one investigation, at Workwell I think, they found that the 2 day CPET was 95% accurate, and the patient who had a "false" positive was an HIV patient, and ME was excluded using exclusionary criteria I think - they might have been unfortunate enough to have had HIV and ME together.

Just recently, though really dating back to 2000 or earlier ,there has been renewed interest in cardiac involvement in CFS and ME. However the problems are different from what most doctors even look for, so they miss them. There are effective tests going back to 1940, 1946 , 1949 and 1954. They are the tilt table test, quantitative EEG, CPET (two day protocol) and a sleep study. Two of these are problematic for severe patients, and sometimes the less severe, the TTT and CPET.

We have no diagnostic tests for ME or CFS, but what we have are tests that establish mild to severe physiological abnormalities. The abnormalities are real, often vary within a range from patient to patient, but none are universal across "CFS".

 

[frog_in_the_fog]

If you can get effective help straightaway, you are one of the lucky ones.

It seems doctors don't feel qualified to give an ME/CFS diagnosis; like it is with a lot of us, I get run around in a circle quite a bit. Same tests run again and again, with the same results, and hardly any treatments that actually work. Just a whole lot of come back in six months, you kind of just get used to it by the first decade. Once you finally find a treatment that has promise, it can take years to get significant results. Most of us here are human guinea pigs and/or pin cushions.

Let's hope research illuminates the way as much as it has for other disorders, with effective treatments and diagnosis available to all in need.

 

[Hutan]

Symptoms are a sign something is physically wrong not psychological but went on to say that he believes that people diagnosed with cfs have some deep underlying problems that most Drs won't check for like metabolic autoantibodies or some genetic/mitochondrial problem that hasn't been found.
I always thought that this just might be the case that's why it seems there are a bunch of subsets and stuff. but I feel like that would have been researched or something (sense it's cfs I guess it was probably never researched).
Any opinions?

I think what the doctor has said so far is quite sensible and he may be a good partner as you search for what the 'underlying problem' is in your case. The crucial next questions are what is he suggesting to do for you now and how much will it cost?

The things he mentions are indeed being researched, just no clear answers yet.

 

[Oberon]

I think the way that doctor described it is what I would consider to be CFS. A catch all term with some fairly specific sets of symptoms with a generally unknown cause. It reminds of what Gastrointestinal doctors do with IBS. If they can't figure out what's wrong with your digestion it becomes IBS even if it could have a multitude of causes.

It sounds to me like this may be a good doctor who is not necessarily a fan of the term CFS. Semantics really....

 

[Woolie]

I like the sounds of this doctor, @eastcoast12! Wish I had them fighting in my corner! I too feel that CFS/ME is a way of capturing some of the key symptoms, not an explanation, and certainly not an end in itself. In fact, having the label could do us harm as well as good, because doctors can so easily confuse diagnosis with explanation, and think the problem's solved as much as it will ever be.

I think all things considered, its better to have the lame groupings ME/CFS/whatever than nothing at all. Even with all their distasteful psychological and moral connotations. I felt much worse before the diagnosis, just didn't know what was wrong and was so desperately searching for an answer. I still don't know, but having the diagnosis of ME at least helped me realise I'm not the only one, I'm part of a pattern. That's helped me to come to terms with the uncertainty of it all.

And brought me to PR.

What do other people think?

 

[sarah darwins]

Hi @eastcoast12 - your specialist is right about it currently being a wastebasket diagnosis, a good excuse for doing nothing. The question is: what does he propose doing about your illness?

If you're looking to get started with investigation of symptoms, you could do a lot worse than Hip's famous Roadmap ...

https://sites.google.com/site/cfstestingandtreatmentroadmap/

 

[eastcoast12]

Hi @eastcoast12 - your specialist is right about it currently being a wastebasket diagnosis, a good excuse for doing nothing. The question is: what does he propose doing about your illness?

Well he said I should check out simethng called cbt and get. Anyone know what that is? Jk, if he said that I'd be out the door.
He brought up some really good points about a lot of the so called biopsychosocial bullshit. The symptoms we have are real but I think what he was getting at was a diagnosis of cfs gets you nowhere but we all have some underlying serious problems and that sometimes patients tend to kinda give up looking for other causes. Not the patients fault just the fault of the way the Ned field is set up.
My wife mentioned to him that he seems to think outside the box and he said I never do its just that my box is a lot bigger than others. He went on to say that modern medicine has basically turned into a checklist of about 5-10 things, vitals, basic bloodwork, the usual tests that don't show anything but the basics. If they can't figure it out it usually ends up passed on to another doc who goes through his basic checklist and the same thing hale s over and over until you find someone compassionate and truly curious about your condition. hes had a few really good results with people who had been diagnosed with cfs but digger deeper he found genetic disorders, mitochondrial disorders and metabolic disorders. All of them were really rare and it wasn't till centric testing that they finally figured it out.
Sorry for the long post reply. Just thought it was I tersting. I mean he saying we all have cfs but in the future there won't be cfs but a more personalized evaluation digging deeper into the auto antibody stuff. He mentioned glycogen storage(I have a bad history of random rhabdo) but he was positive that mitochondria aren't getting what they need which caused the problems. Very interesting and in a way it makes sense I guess.
In a way he kinda legitimizes what we're going through but he thinks that there will be underlying causes for all the different subsets that will eventually found. From what I got i guess he described cfs but but all, he said all avenues must be looked at no matter how uncomun a disease. I gotta say, no offense to anyone here, that I kinda feel a little more positive taking to him. My regular gp sends people to this guy when he can't figure it out and hes 8/8 batting and batting 1000. He's had a few patients very similar to our predicament and did some deep digging. He found some really bizarre autoantibodies. realistically I ain't expecting any improvement. Well I mean I guess I'm guess I improved according the every journal in the uk(is that right or should it be England , always forget sorry). In gonna break this up so its not crazy long

 

[Gingergrrl]

@eastcoast12 Am so curious who this doctor is since you said he investigates rare autoantibodies which is the path that I am now on and also believe that "CFS" is a wastebasket diagnosis in the US. Would you be willing to share this doctors name by PM? I assume from your avatar that he is on the east cost (I am west coast) but I am still very curious!

 

[eastcoast12]

I like the sounds of this doctor, @eastcoast12! Wish I had them fighting in my corner! I too feel that CFS/ME is a way of capturing some of the key symptoms, not an explanation, and certainly not an end in itself. In fact, having the label could do us harm as well as good, because doctors can so easily confuse diagnosis with explanation, and think the problem's solved as much as it will ever be.

I think all things considered, its better to have the lame groupings ME/CFS/whatever than nothing at all. Even with all their distasteful psychological and moral connotations. I felt much worse before the diagnosis, just didn't know what was wrong and was so desperately searching for an answer. I still don't know, but having the diagnosis of ME at least helped me realise I'm not the only one, I'm part of a pattern. That's helped me to come to terms with the uncertainty of it all.

And brought me to PR.

What do other people think?

I agree to a point. I remember my first diagnosis which I was extremely disappointed the

 

[snowathlete]

Your doctor doesn't sound as bad as many. Most, like he says, run tests against less than half a dozen basic things and then diagnose you and that diagnosis allows them to stop looking, to get you out of their office. It is rare that doctors rule out even the basic things that they should mandatorily have to rule out before giving a diagnosis of ME/CFS. For those diagnosed improperly, it is a wastebasket diagnosis that does nobody any favours.

But it is also the case, in my opinion, that you can exhaust the reasonable tests and arrive correctly at a diagnosis of ME/CFS. If it is a safe diagnosis then it needs to be seen as such, they've been diagnosed because other things have been ruled out and they have the right signs and symptoms. ME/CFS is way too common to be explained by all the possible rare diseases. So it then needs proper research done, else no one gets better (at this point, referring to it as a wastebasket diagnosis is unhelpful).

It has also become trendy in recent years to see ME/CFS as a dozen or more different diseases (sub groups) but I hold the unpopular view that this is not the case. I suspect the vast majority of people with a safe diagnosis of ME/CFS have one disease, it's just that some symptoms are manifest in people differently. But either way, we need research to find out.

 

[sarah darwins]

Well he said I should check out simethng called cbt and get. Anyone know what that is? Jk, if he said that I'd be out the door.
He brought up some really good points about a lot of the so called biopsychosocial bullshit.

Er, well CBT and GET are the cornerstone of what the biopsychosocial bullshitters recommend as treatment — Cognitive Behavioural Therapy and Graded Exercise Therapy. This guy seems a little contradictory.

 

[Effi]

@eastcoast12 I think a lot of what you're doc is saying is probably going to end up being true. I think Ron Davis was talking about the need for personalized medicine too, right? That is quite possibly the future, because the rigid checklists and disease labels we have to work with right now are just getting ridiculous, and are causing too many people endless suffering.

I just hope this doc isn't just saying stuff, and that he'll actually try to find a solution. I'm saying this cause I know a doc over here who has written a book called 'CFS is a myth', saying something along the same lines as your doc, that the symptoms are very real, but that CFS is an empty, waste basket label, and there is ALWAYS something else hiding. You just have to look hard enough and you will find it.

Thing is, whatever is hiding is something we don't know anything about yet, so how can it be discovered? This doc I'm talking about in practice just goes around giving loads of people the Addisson's disease label (which is a pretty rare condition) and treating them with hydrocortisone, which makes some of them feel ok for a few months, but when they have to get off it they sink into a deep hellish hole. So even though I'm sure he means well, and he's right in a lot of the things he wrote in his book, in practice he can't fix us either, because science hasn't caught up with us yet.

I do hope from the bottom of my heart that your doc is different and he does find relief for you. Science isn't standing still and the fact that your doc is totally on board with the reality of our situation is very hope giving.

 

[taniaaust1]

I always thought that this just might be the case that's why it seems there are a bunch of subsets and stuff. but I feel like that would have been researched or something (sense it's cfs I guess it was probably never researched).
Any opinions?

if someone is found to have a cause, the ME/CFS diagnoses is then removed. Some ME/CFS specalists have found that up 50-60% of us have been wrongly diagnosed and other things were misssed. It is well known that ME/CFS may be missed other issues.

So its completely true that for many or maybe even most of us, the ME/CFS diagnoses is actually bullshit. I do though also believe that there is an actual illness or maybe more then one which is undiscovered yet and is much of the rest of the ME/CFS cases.. as what has appeared in ME outbreaks at times.

anyway doctors with his attitude can be very good to work with as they will keep trying to rule other things out.

 

[Gingergrrl]

Er, well CBT and GET are the cornerstone of what the biopsychosocial bullshitters recommend as treatment — Cognitive Behavioural Therapy and Graded Exercise Therapy. This guy seems a little contradictory.

He was joking and wrote "jk" and the doctor did not actually say these things! I did a double take too but re-read it and he was definitely just joking!

 

[eastcoast12]

I think the way that doctor described it is what I would consider to be CFS. A catch all term with some fairly specific sets of symptoms with a generally unknown cause. It reminds of what Gastrointestinal doctors do with IBS. If they can't figure out what's wrong with your digestion it becomes IBS even if it could have a multitude of causes.

It sounds to me like this may be a good doctor who is not necessarily a fan of the term CFS. Semantics really....

If funny that you mention that cause he brought up ibs and fibro. He has the same opinion. He believes it is a physical symptom from a physical disease as with fibro. Again he stressed physical symptoms are warning signs not psychological manifestations. He said eventually that they should all be figured out relatively soon(a couple years or so)
It's definitely an u testing convo. I mean he's not denying the symptoms and their physiological caused I just think he believes one your diagnosed with cfs it's hard to be takin serious by shitty doctors. I'd live to hear from you guys.
Sorry If this came across hard to follow my brain is going into full fledged hangover mode(don't drink that's just how I feel when u relapse. Like bachelor party hangover without the cool memories or fun

 

[Woolie]

It has also become trendy in recent years to see ME/CFS as a dozen or more different diseases (sub groups) but I hold the unpopular view that this is not the case. I suspect the vast majority of people with a safe diagnosis of ME/CFS have one disease,

That could be true, @snowathlete. After all, if we didn't know anything about the disease process underlying MS, what we'd have is a collection of very different complaints in different people. Actually, much more different than those of CFS, and especially narrowly defined CFS.

 

[Gingergrrl]

It has also become trendy in recent years to see ME/CFS as a dozen or more different diseases (sub groups) but I hold the unpopular view that this is not the case. I suspect the vast majority of people with a safe diagnosis of ME/CFS have one disease, it's just that some symptoms are manifest in people differently. But either way, we need research to find out.

I don't think it's trendy as much as doctors are learning more (the good doctors of course) so the subsets are becoming more apparant. If there were not subsets, how could one group be completely immune deficient and another be completely autoimmune (just as an example). I'd easily bet there are at least 100 different illnesses represented on this board alone that present with similar and overlapping symptoms. Am hoping science sorts this all out one day while I, and all of us, are still alive to benefit!

 

[sarah darwins]

He was joking and wrote "jk" and the doctor did not actually say these things! I did a double take too but re-read it and he was definitely just joking!

Ah ... thank you! I missed the 'jk'!! I'll get my coat ....