• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

annoying case history on Medscape diagnosing CFS

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I was alerted to a case history this morning at http://reference.medscape.com/viewarticle/842828
Sorry, you need to be logged in to view this.
Essentially there is insufficient evidence for the diagnosis to be made.. I certainly didn't recognise it, and it seems as though other people who are ticking the multiple choice answers don't either, which is something at least! But it's annoying that the article makes it seem so easy to diagnose, particularly as it says it is a diagnosis of exclusion....
There are the usual culprits in there in terms of treatment options, and I was very irritated by the fact that having too much rest is described as harmful....
 

halcyon

Senior Member
Messages
2,482
I saw that, it was pretty awesome. There was nowhere near enough information to make any of the listed diagnoses. It was a perfect example of what happens in reality. Do a half-assed workup, toss her in the CFS wastebasket because she has fatigue, joint pain, and headaches.

I was baffled by them including the data about the IOM criteria in there, when the patient didn't even meet that criteria. Then they went on to advise CBT/GET (GET for exertion intolerance, huh?) and noted that the patient improved on these interventions. Complete garbage.
 

SDSue

Southeast
Messages
1,066
She also has a TSH of 4. Many labs now consider 3 to be the top of "normal" range.

(Of course, lowering the number every few years does nothing for those who suffered undiagnosed hypothyroidism and lost years of their lives while being told there was nothing wrong with them. Don't get me started lol.)
 

Sidereal

Senior Member
Messages
4,856
They did however make sure to inform us that pain in ME/CFS is mild, opiates are not indicated, prolonged rest is harmful and that the majority of patients have major depression. I must be occupying some alternate reality then.
 

SDSue

Southeast
Messages
1,066
They did however make sure to inform us that pain in ME/CFS is mild, opiates are not indicated, prolonged rest is harmful and that the majority of patients have major depression. I must be occupying some alternate reality then.
If this is "mild", "moderate" must be death. What would "severe" be?
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
I know, right!? What a mess of an article! When I went through the article earlier today I actually voted for sleep apnea.

Just checked back on the comments, someone wrote a great, lengthy critique. Thank you, whoever you are.

At least 24% of the poll respondents voted for the CFS diagnosis. That means some are thinking about it. Now the readers will think to look for dirty, overweight, middle aged, depressed, tired, previously unprotectedly promiscuous women and treat them with CBT and GET because there is nothing else. Great take home message!
 

SDSue

Southeast
Messages
1,066
I know, right!? What a mess of an article! When I went through the article earlier today I actually voted for sleep apnea.

Just checked back on the comments, someone wrote a great, lengthy critique. Thank you, whoever you are.

At least 24% of the poll respondents voted for the CFS diagnosis. That means some are thinking about it. Now the readers will think to look for dirty, overweight, middle aged, depressed, tired, previously unprotectedly promiscuous women and treat them with CBT and GET because there is nothing else. Great take home message!
It'd be interesting to know what percentage of us were obese when diagnosed. Most stories I've heard are from people who were fit and active - like typical over-achieving under-methylators. Who knows, but I didn't like that they threw in the obese thing.
 
Messages
15,786
Once again, I cannot read this article because I know I will be too annoyed and it will ruin my night. This stuff makes me too angry to read any more :mad::mad::mad:.
It wasn't completely horrible. Mostly just ignorant due to relying on Fukuda and the old information on the CDC site.

There were only a few comments that made me want to (verbally) eviscerate the author. And there weren't any really bad comments from the audience, just some clueless, and a couple quite good ones.
 

Sidereal

Senior Member
Messages
4,856
This patient was followed up at 3-month intervals for 1 year. Her symptoms were under good control with cognitive-behavioral therapy, and she managed to adapt to a new lifestyle and recognize her activity limitations.

Oh the irony, it burns my retinas. The article states that CBT helped her adapt to limitations imposed by her illness. I guess the author didn't get the memo that successful CBT for CFS patients - British psychiatry's only "gift" to the world - entails convincing the patient not to adapt to their illness but to act as though they're not ill.
 

chipmunk1

Senior Member
Messages
765
Oh the irony, it burns my retinas. The article states that CBT helped her adapt to limitations imposed by her illness. I guess the author didn't get the memo that successful CBT for CFS patients - British psychiatry's only "gift" to the world - entails convincing the patient not to adapt to their illness but to act as though they're not ill.

it seems that CBT is mainly a tool that helps the physician make the patient accept the fact that there is no real treatment available. No wonder it is so popular.
 
Messages
10,157
They also are missing that she is on a cholesterol lowering medication which she started a few months before the onset of her symptoms. From what I have read about these meds, some of the side-effects include joint pain, muscle pain, fatigue, and cognitive issues.
 
Messages
15,786
They also are missing that she is on a cholesterol lowering medication which she started a few months before the onset of her symptoms. From what I have read about these meds, some of the side-effects include joint pain, muscle pain, fatigue, and cognitive issues.
Additionally, I don't think I've heard of any ME/SEID having a good or even neutral experience with statins after disease onset. And there are even some anecdotal reports of people developing ME/SEID shortly after starting on statins.

Generally the description was just way too vague to draw any conclusions, the proposed treatments were crap, and the suggestion that rest is harmful was outrageous.
 

beaker

ME/cfs 1986
Messages
773
Location
USA
What was the onset of her symptoms like ? Was she overweight at onset ? Did she gain weight after becoming sick ? Did she have poor hygiene b/c she was too exhausted and /or sick to shower prior to her appointment or to do both in one day ?
I picked out sleep apnea as first to investigate. ( snoring and sleep disruption) There was certainly nothing to make a positive dx of anything w/ what was given.
Also Kina brings up a good point on statins. ( was that your comment ? : ) )
What about PEM ? I guess they didn't really read the IOM. Just a glance to see the new name. :bang-head:

Perhaps they ignored the low positive/borderline ANA based on the normal SED , CRP, and PE (no swelling), but it should of been retested and watched over time at the very least. Family history, onset of symptoms and other lacking information ( PEM question answered and poor man's tilt, Romberg and other neuro eval that could of been done in office) would determine to me whether I would aggressively pursue that angle at this time. Or wait until
sleep testing was done and if any necessary treatment of any sleep issue did not resolve symptoms. Unless, of course, repeat testing showed further elevation.

And yes, a full thyroid panel should of been done w/ TSH of 4. They used they old range.

I am shocked at how much was missed. And I know I'm not even listing it all.

I can't even dignify the whole CBT/GET thing IF they magically somehow did have dx right. In fact the one treatment choice that was most reasonable -- rest ( don't push is my interpret of that)-- was dissed.

This was a big Fail on so many many levels.

PS on pg 3 of article :
Because the main purpose of diagnostic testing is to rule out other causes of chronic fatigue syndrome, the work-up includes
WRONG. They should of said the tests were done because of the symptoms that presented including chronic fatigue. BUT "other causes of CFS " ??????? another example of what is so wrong for so many reasons.
ok I have to stop or I'll rip out all my hair.