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Email to IOM re: diagnostic algorithm

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
I think the ICC criteria are great. Perhaps they can be adopted with a few changes like this:

1. PENE is the compulsory symptom.
2. Asthenia-predominant category (as in debilitating fatigue).
3. Neurological-predominant category (neurological as in the ICC).
4. Viral symptom-predominant category (as in Immune in the ICC)
5. POTS-predominant category ( as in Cardiovascular in the ICC)

This would probably cover everybody.
 

SOC

Senior Member
Messages
7,849
I think the ICC criteria are great. Perhaps they can be adopted with a few changes like this:

1. PENE is the compulsory symptom.
2. Asthenia-predominant category (as in debilitating fatigue).
3. Neurological-predominant category (neurological as in the ICC).
4. Viral symptom-predominant category (as in Immune in the ICC)
5. POTS-predominant category ( as in Cardiovascular in the ICC)

This would probably cover everybody.
Hmmm... so which category would I fit in? I have (or have had when not pacing) debilitating fatigue. I have (or had pre-AVs) clear viral symptomology. My OI (not POTS, another form) severely limited what I could do (until I was treated properly). I have had, and still do have to a significant extent, cognitive dysfunction. Is that the neurological-predominant category?

I wouldn't say my symptoms were predominant in any one area. I've had all the ones listed above to greater and lesser degrees over time (depending on treatment mostly). At my worst, when I was bedbound, I had them all at high levels.

I'm all for PEM/PENE as a necessary criteria. :)
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Hmmm... so which category would I fit in? I have (or have had when not pacing) debilitating fatigue. I have (or had pre-AVs) clear viral symptomology. My OI (not POTS, another form) severely limited what I could do (until I was treated properly). I have had, and still do have to a significant extent, cognitive dysfunction. Is that the neurological-predominant category?

I wouldn't say my symptoms were predominant in any one area. I've had all the ones listed above to greater and lesser degrees over time (depending on treatment mostly). At my worst, when I was bedbound, I had them all at high levels.

I'm all for PEM/PENE as a necessary criteria. :)

What category would best fit you at this time?
 

SOC

Senior Member
Messages
7,849
What category would best fit you at this time?
With treatment, or without? With pacing, or without? Both make a big difference in my symptoms.

Are you suggesting that our category would change with time or treatment? I don't think that's the usual way illness categories work.
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
Let me have both , with and without treatment and pacing.

Yes, this illness is unique in that our categories may change over time.
 

SOC

Senior Member
Messages
7,849
Let me have both , with and without treatment and pacing.

Yes, this illness is unique in that our categories may change over time.
Without treatment and pacing, I would fit all of them except that my OI is not classic POTS. No one category of symptoms is clearly predominant. With treatment and pacing I don't really fit any of them. Nevertheless, I can PEM myself if I don't pace and I have tested immune abnormalities, so I clearly still have the illness.

I imagine my PCP (and my specialist) would have a fit if s/he had to recategorize me at every visit depending on treatment changes and how well I paced myself since my last visit. ;)

While some of us may fit only one of your categories, I suspect most of us would fit equally well in at least two at any given time. Few of us have only one class of symptoms from what I hear here at PR, even if you are trying to consider the predominance of symptoms.
 

Hope123

Senior Member
Messages
1,266
Thanks for giving us a clinician's viewpoint @Butydoc, makes sense - busy practice, needs easy, quick tools. Do you think the patient would then need to be referred to a SEID specialist, or is there enough here for any physician to treat and manage SEID? I would think physicians would still be scared away of managing such a complex illness, and the patient would probably fare better at least seeing a real trained specialist at least initially...

As someone who worked in primary care (and also later acquired a specialty so I've seen it on both sides), the places I trained taught that a good primary care doc should be able to handle 95% of all illnesses, even complex ones, to some extent. The 5% are those rare diseases where they are so odd, the person should be referred fairly quickly to a specialist. As far as we know, SEID, ME, CFS, etc. are not rare illnesses so generalists need to learn about them too.

A good doc should not be "scared" or intimidated; it's a challenge to keep up with the medical literature but SEID is not first complex disease that generalists have had to deal with. It's only because there's been so much confusion over how to diagnose and how to treat and the stigma of the illness, that so many people have problems finding a knowledgeable doc.

Ideally, the role of the primary care physician in SEID should be no different than the role they now serve for people who have other complex illnesses, e.g. multiple sclerosis, congestive heart failure, rheumatoid arthritis, breast cancer, etc. -- conditions which my patients had. Aside from the low supply of specialists, we should not let primary care docs off the hook so easily! Many of the symptoms -- e.g. sleep, pain, even orthostatic intolerance -- are within the regular scope of what generalists could manage or learn to manage. Pacing to help PEM is similar to "energy conservation/ activity management" which is used to manage activity-related fatigue and other symptoms in illnesses like arthritis, MS, cancer. It's true that specialists handled the more complex aspects of treatment for my primary care patients -- like immunomodulators for MS or chemo for breast cancer -- and appropriately so but there are basic issues that all generalists should still be able to address.

The analogy for SEID is that while, for example, the generalist can start with basic assessment/ treatment for symptoms (sleep, pain, etc.), educate about the illness (e.g. what PEM is), and give advice about activity, the specialist might give more complicated treatments, like rituximab or long-term antivirals. The other roles generalists can serve are to continue to monitor the patient's other health conditions, send referrals to and coordinate care among different specialists as needed (e.g. stomach docs for gut issues), and assure patient's medications do not interact.

Many people in the US believe that specialists are all you need for your care but in fact, generalists and specialists serve different, although symbiotic,roles. I've been in the position of being the generalist for people who have seen only specialists for years; in some cases, I've found that their medication lists included multiple drugs that interacted with each other because no one was there to monitor care among the different specialists.

I'd also add that the line between specialists and generalists can be blurred. Some of our best docs for this illness are generalists -- Peterson, Bateman, Rowe, Enlander -- but they are now specialists for this disease because they made it their job to learn as much as they could about a specific illness.
 

SOC

Senior Member
Messages
7,849
Thank you, @Hope123, for that highly informative post! That explains a lot about the, until now, puzzling thinking of a number of government officials re: ME/CFS. The crux of all this, of course, is getting PCPs sufficiently educated to do even the basic management of this illness. But that's where we need to be in the long run, so we might as well get started walking down that road.
 

Nielk

Senior Member
Messages
6,970
I don't know where you live but in NY, MS patients are referred to Neurologists. rA patients to Rheumatologistscancer patients to Oncologists. The GP should coordinate it all but I would not want my GP to treat my RA. It is too complex and they cannot be up do date with the newest treatments. I have never heard of a GP treating a cancer patient. It doesn't make sense. If I had cancer, not only would I go to an oncologist but I would seek one out who specializes in the specific cancer.
 

Hope123

Senior Member
Messages
1,266
I don't know where you live but in NY, MS patients are referred to Neurologists. rA patients to Rheumatologistscancer patients to Oncologists. The GP should coordinate it all but I would not want my GP to treat my RA. It is too complex and they cannot be up do date with the newest treatments. I have never heard of a GP treating a cancer patient. It doesn't make sense. If I had cancer, not only would I go to an oncologist but I would seek one out who specializes in the specific cancer.

You misunderstand my point. I've actually practiced in NY along with two other states. If you re-read my post, I specifically said when I've taken care of cancer patients, the oncologist takes care of the chemo, for example. However, aside from coordinating care, if that patient happens to have problems with pain/ nausea/ sleep during their treatment, they can also reach out to me and I will try to handle it as I have experience handling those symptoms. In some cases, the GP is easier to reach than the oncologist and depending on the situation/ patient, some oncologists prefer the GP handle those issues while they concentrate on the chemo. Similarly with RA treatment -- I'm not talking about GPs giving treatments like anakinra or rituximab but rather like ibuprofen or referral to physical therapy to help with symptoms.

[And the above comment refers to areas with large populations of docs. In fact, some of the people I admire the most are doctors in areas, like rural America, where there are few docs and even fewer specialists. In those cases, GPs often have to take on larger roles; some consult with specialists regularly via teleconference for example but they give medications -- e.g. for Hep C -- that would be routinely given in cities by specialists. Otherwise, some patients would get even less or no care at all.]
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I've met two PCP's who were smart enough to manage the day-to-day concerns of complex patients. One of them admitted to me that specialists sometimes take a hands-off approach and expect her to do all the work, which she was ok with as long as the specialist actually explained some of the tricky stuff about less-taught conditions when needed.

I've also had specialists who took on the role of a PCP in making abnormal sure lab tests (even ones they themselves did not order) got proper referrals, and so on, as my (serial) PCPs at that time were rubbish and did nothing.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
If you are dealing with a cardiologist who regularly runs stress tests, the term exercise tolerance means the patient completed the test without collapsing or showing serious cardiac abnormalities during the test. This will be written in the chart before the patient leaves, completely ignoring any question about what happens in the next 24 to 72 hours. Should the patient end up in the emergency department during this period this might (or might not) be revised. It is quite probable no one will tell the cardiologist. Don't expect a change in this definition of exercise tolerance without a long fight.

nods. That happened to me. I got sent for an exercise stress test I think it was (it was on treadmill) and I did that okay (other then loosing my balance and actually falling onto the floor when it was first started).

So due to that my cardio report says I did this fine and was healthy. Next day of cause I was dreadfully ill and ended up in bed but that isnt in my notes at all.

So I agree, exercise intollerence means different things to different people and this new name could even prevent some who have ME/CFS from being diagnosed when people like cardiologists report the person doesnt have exercise intollerance at all from a single test and no next day follow up.

The name will diagnostic issues for some.

If anyone reading this comes up with a rare disorder which will end up in the wastebasket at the bottom, and possibly lead to permanent injury or death, they could send me a message so I can include it in a later post.

@anciendaze Many patients with systemic Mastocytosis also can have exercise intollerance and that illness can be deadly and has a wide range of symptoms as it can affect any body system.. so cases of that, could be misdiagnosed as ME/CFS or the new defintion.

Systemic Mastocytosis, some cases are hard to diagnose with tests so its easily missed (my uncle has it and said that sometimes a bone marrow test may be needed to pick it up.. and even then it may not show in all places in the bone marrow)
 

Forbin

Senior Member
Messages
966
I didn't even mention my fatigue to the first doctor I saw because the orthostatic intolerance and cognitive problems were overshadowing everything else.

I can completely relate to this. If I mentioned fatigue at all when I first went to see my doctor, it was way down on my list. I'd had a severe episode of vertigo and, by the time I saw my doctor, I still felt somewhat woozy. I also felt a bit like I had the flu. These symptoms and many more would get much worse in fairly short order, but initially the symptoms seemed fairly limited and of no great concern... at least to my doctor.

However, the SEID criteria pretty much disallows a diagnosis on the initial doctor's visit by requiring that the profound fatigue and decreased function persist at least 6 months.

By six months, I was a wreck and probably would have mentioned fatigue or, more accurately, the profound weakness and lack of stamina that one gets with the flu. I probably just said, "I feel like I have the flu." Hopefully, a doctor would interpret that as "profound fatigue."

I'm also somewhat concerned about how likely it is that a patient (or doctor) will recognize delayed PEM even after 6 months (I'm still not sure if PEM is "delayed" by definition). I didn't recognize PEM until years after onset when my "baseline" malaise had tapered off enough that I could make the connection between exertion one day and increased malaise the next.

A lot of this is going to depend on the doctor's skill at taking the history of potential ME/SEID patients.
 

Nielk

Senior Member
Messages
6,970
You misunderstand my point. I've actually practiced in NY along with two other states. If you re-read my post, I specifically said when I've taken care of cancer patients, the oncologist takes care of the chemo, for example. However, aside from coordinating care, if that patient happens to have problems with pain/ nausea/ sleep during their treatment, they can also reach out to me and I will try to handle it as I have experience handling those symptoms. In some cases, the GP is easier to reach than the oncologist and depending on the situation/ patient, some oncologists prefer the GP handle those issues while they concentrate on the chemo. Similarly with RA treatment -- I'm not talking about GPs giving treatments like anakinra or rituximab but rather like ibuprofen or referral to physical therapy to help with symptoms.

[And the above comment refers to areas with large populations of docs. In fact, some of the people I admire the most are doctors in areas, like rural America, where there are few docs and even fewer specialists. In those cases, GPs often have to take on larger roles; some consult with specialists regularly via teleconference for example but they give medications -- e.g. for Hep C -- that would be routinely given in cities by specialists. Otherwise, some patients would get even less or no care at all.]

I have a GP who coordinates my care. He refers me to my Rheumatologist for my RA, to my Endocronologist for my diabetes and to my ME/CFS doctor for my ME. He gives me a yearly check up and will take care of my colds, sinus infections and will review the reports from my specialists. He needs to know the basics of my RA, diabetes and ME but, he is not the one caring for my complex diseases.

If a GP's responsibility would be to take care of all complex diseases, he would have less than the current 6 minutes that he spends with patients.

My GP has very limited knowledge of ME/CFS. Basically what he knows is what is n the CDC website.

My ME/CFS specialist has written handbooks on ME/CFS. He has treated tens of thousands of patients. He takes extensive testing and treats with varied treatments like anti-virals, ampligen, GcMaf, methylation treatments, LDN and more.

I do not want to be left in the hands of my GP who will take not tests and just give me a sleeping pill.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
delayed PEM
I didn't notice the PEM at first. I just felt horribly sick. I also felt like someone drugged me. I became of aware of PEM when I stayed home to try to recover. The first day I was home I decided to tidy the living room a little and then get into bed. I expected that the tidying would make me a little worse, and that in the morning the "worse" would be gone, as it is if I did a small thing while having the flu. But it was not. Two weeks later the "worse" was still there, even though I was in bed the whole time except for meals and bathroom.
 

Hope123

Senior Member
Messages
1,266
I have a GP who coordinates my care. He refers me to my Rheumatologist for my RA, to my Endocronologist for my diabetes and to my ME/CFS doctor for my ME. He gives me a yearly check up and will take care of my colds, sinus infections and will review the reports from my specialists. He needs to know the basics of my RA, diabetes and ME but, he is not the one caring for my complex diseases.

If a GP's responsibility would be to take care of all complex diseases, he would have less than the current 6 minutes that he spends with patients.

My GP has very limited knowledge of ME/CFS. Basically what he knows is what is n the CDC website.

My ME/CFS specialist has written handbooks on ME/CFS. He has treated tens of thousands of patients. He takes extensive testing and treats with varied treatments like anti-virals, ampligen, GcMaf, methylation treatments, LDN and more.

I do not want to be left in the hands of my GP who will take not tests and just give me a sleeping pill.

I'm glad you have a team of docs taking care of you but imagine how it could be if your GP had more knowledge about ME/CFS. Even if he/ she wasn't managing the treatments/ tests directly for that condition, imagine not having to explain as much or not having your ME/CFS specialists have to explain as much to them. Imagine them reinforcing to your family, friends, employers, that you are not crazy, lazy, or depressed but SICK. Imagine that when you have a symptom related to ME/CFS, they are at least sympathetic or won't dismiss you because they think you're just psychosomatizing. Medicine isn't always about just tests and treatment, it's also about educating people and supporting them emotionally. That may not matter as much for your individual situation but for many people, it matters.

I'm also talking about the IDEAL situation and not so naive to think that we're going to get there immediately or even soon but I've always felt if you don't even conceptualize the ideal, you're never going to get there. If you think you can't, you can't. If you think you can, you at least have the possibility. As many on this site know, doctors aren't equally competent, curious, sympathetic, etc. but we can try to reach those want to improve. Time/ reimbursement is an issue but while that exacerbates the situation, it is not solely a problem of this disease, it's a problem in all of medicine. Most doctors agree they need more than a few minutes to take care of people well.

[Another interesting point, again illustrating how different care is from place to place, but I handled the majority of diabetes treatment as a primary care doc. I was trained to do it and where I practiced, it was not common to refer it out unless it was a complicated situation. Even the endocrinologists would be surprised if I referred a non-unusual case to them. But the situation depends on the doctor's training, experience, comfort level/ interest with a topic, etc. and the patient's preferences.]
 

Kati

Patient in training
Messages
5,497
In our socialized health care system, GP's are trained to reduce the amount of testing in order to save money. So when I go to my Dr asking for tests, even the tests that are currently abnormal like my ESR, she doesn't want to.
 

anciendaze

Senior Member
Messages
1,841
@Kati

Private insurance doesn't like to pay for testing either, in the absence of clear clinical signs. This is why the disease was called "yuppie flu"; those patients who had previously been high achievers, and still had either plenty of money or special insurance, costing far more than most people can afford, were the only ones who got the full battery of medical tests. Companies which are paying an employee millions every year will go to great lengths to keep them at peak performance, and a policy costing one million dollars per year is not considered excessive.

This is also how Byron Hyde gets patients referred to him who have undetected syphilis, Lyme, toxoplasmosis, myocarditis or chunks of brain missing.

None of this requires a belief in any special conspiracy aimed at a particular kind of patient. As long as even referral for tests requires the same kind of convenient clinical signs an old-fashioned doctor depends on there will necessarily be some kind of patients who "fall through the cracks" because they can't exhibit convenient signs, like the bullseye rash of Lyme disease, at the same time they have detectable anomalies in serology.

In the case of my state, even exhibiting such a rash means nothing, because this is said to be due to STARI. We can't even estimate the number of STARI diagnoses because STARI is not a reportable disease. Under these circumstances, it is a wonder that hundreds of confirmed Lyme cases have turned up here.

We are actually better off than patients with various forms of period paralysis, which many doctors have no idea exists. Some of them will actually die due to misdiagnosis in emergency departments. The cost of preventing such deaths is apparently too high to allow change.
 

Nielk

Senior Member
Messages
6,970
In our socialized health care system, GP's are trained to reduce the amount of testing in order to save money. So when I go to my Dr asking for tests, even the tests that are currently abnormal like my ESR, she doesn't want to.

It is the same with private insurance. In addition, the IOM criteria does not recommend any testing for patients. Why should insurance companies pay for them then? They won't cover it.