USA: National Institutes of Health (NIH) intramural ME/CFS study

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Wonko said:
It seems PEM is a very wooly thing.
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Inara said:
PEM is not unique to ME.
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Ravn said:
This would mean PEM is not unique to ME after all, and CCC is not that good at identifying ME.
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If PEM is not unique to ME or ME/CFS, it can still only worsen the symptoms-set unique to a disease.

So, unless other diseases also have all the following: unrefreshing sleep, cognitive dysfunction, orthostatic intolerance and others listed under the SEID and CCC criteria, it would be pretty hard for someone with another disease to get to a diagnosis with those criteria.

Do EDS, MS, Lupus, etc. have those same symptoms listed under SEID and CCC? I don't think so. Do they have PEM? Perhaps. EDS is said to have PEM but it will not worsen symptoms EDS patients don't even have and I am not certain EDS has even the core symptoms of SEID. Dr. Davis now believe an MS type (relapsing/remitting?) also have ME/CFS. Lupus does not have the same symptom set listed under SEID or CCC criteria. And, EDS patients have had LIFELONG fatigue. CCC and SEID state the fatigue must be new.

I think people had been misdiagnosed as having ME/CFS by a doctor using Fukuda or they diagnosed themselves, perhaps a doctor saying they had Chronic Fatigue and the patient thinking they have Chronic Fatigue Syndrome.
 
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Patient4Life said:
So, unless other diseases also have all the following: unrefreshing sleep, cognitive dysfunction, orthostatic intolerance and others listed under the SEID and CCC criteria, it would be pretty hard for someone with another disease to get to a diagnosis with those criteria.
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I wondered the same thing but the more I look the more I see parallels in other diseases. Myasthenia Gravis for example (or Congenital Myasthenic Syndromes - the genetic version of MG in simple terms).
Hall mark is muscle weakness after exertion. Studies have shown
Orthostatic intolerance
Sleep Disturbance
Cognitive Dysfunction

For those with paralysis or seizures I often wonder about MELAS

I'm not trying to argue, just point out similarities I have seen in a few other diseases. I've no idea how one would get tested for the diseases I've mentioned. CMS requires genetic testing for example. Many people diagnosed with MG have seronegative testing for acetylcholine antibodies, so even if you get testing for MG the doc may say, nope, test is negative.

dreampop said:
Again, most important thing I think is for the NIH to release all the infortmation available as early as possible
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I too agree this is very important. I'm hoping as well, somehow, that the ME/CFS doctors coalition will look at this area and publish case reports as they continue to grow so that knowledge of other diseases to test for that may mimic ME/CFS is well documented, so others may benefit.
 
wigglethemouse said:
Myasthenia Gravis for example
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But, I don't see anything about OI, Sleep disturbance, or cognitive dysfunction worsening after exertion, in MG especially 24-72 hours later. Just because you might have a symptom that gets worse after exertion in a disease does not mean that all your symptoms get worse especially days later.

Also, I don't see chronic fatigue or fatigue in MG, just muscle weakness and muscle fatigue.
 
Quite a few people with autoimmune disorders have shown up during the filtering out process. Nath suggested that could be an interesting cohort to study on its own.
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Now that I look at it again, it is not completely clear that they are screening out everyone with an autoimmune disorder, but they might be. I wonder how stringent they are in this regard. For instance, scalp psoriasis is no doubt autoimmune in nature, but it can be relatively mild in some cases, and, of course, limited to the scalp.
 
DokaGirl said:
I'm unclear on what case definition the trial applicants have been assessed under before they get to the NIH.

Not the CCC when they see the NIH researchers, but what have their doctors at home used?

Or is that not stipulated for the trial?

Maybe their GPs could use whatever case definition, and then the NIH uses the CCC to see if these trial applicants fit?

If their doctors are using more vague definitions, that could explain the large number misdiagnosed.

Which is educational in itself for the NIH researchers, the patients and their GPs.



Re the almost 30% misdiagnoses for the participants in the trial, this digs an even deeper hole for very vague definitions like the Oxford criteria.
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@Keela Too @adambeyoncelowe Are you aware of this thread? 30% misdiagnosis rate is important information for NICE.
 
adambeyoncelowe said:
Yes. NICE has flagged '40% misdiagnosis' from one UK study.
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That (entirely bogus in my view) claim comes from a crappy study by Newton which classified someone as misdiagnosed with ME/CFS if the person was found to have a sleep disorder, POTS, nutritional deficiency, depression/anxiety and such common ME/CFS comorbidities. None of those things explain ME/CFS symptoms and treating them in most cases makes little difference to core ME/CFS symptoms.

I remember the huge media blitz in the UK newspapers a few years ago when she claimed a third of ME/CFS patients actually have POTS. Apparently it has never occurred to her that POTS is just another symptom for these people and that jacking up their BP or suppressing heart rate with meds does not cure them.

The sleep stuff is just a money racket for sleep doctors. I can't tell you how many times they tried to get me to have a useless 'sleep study' (pay out of pocket of course) and how many other patients with ME/CFS I know who went along with it and treated their 'sleep disorder' and found that they are still disabled by ME/CFS.

Same goes for nutritional deficiencies... can't tell you how many times a doctor will confidently assert that because they found iron deficiency or low B12 status this explains your symptoms. Naturally it doesn't but it sounds so similar on paper, right? "Tiredness", exhaustion, weakness etc.

Same with psych comorbidities. I don't know of a single person who cured their ME with antidepressants or benzos.
 
Sid said:
That (entirely bogus in my view) claim comes from a crappy study by Newton which classified someone as misdiagnosed with ME/CFS if the person was found to have a sleep disorder, POTS, nutritional deficiency, depression/anxiety and such common ME/CFS comorbidities. None of those things explain ME/CFS symptoms and treating them in most cases makes little difference to core ME/CFS symptoms.

I remember the huge media blitz in the UK newspapers a few years ago when she claimed a third of ME/CFS patients actually have POTS. Apparently it has never occurred to her that POTS is just another symptom for these people and that jacking up their BP or suppressing heart rate with meds does not cure them.

The sleep stuff is just a money racket for sleep doctors. I can't tell you how many times they tried to get me to have a useless 'sleep study' (pay out of pocket of course) and how many other patients with ME/CFS I know who went along with it and treated their 'sleep disorder' and found that they are still disabled by ME/CFS.

Same goes for nutritional deficiencies... can't tell you how many times a doctor will confidently assert that because they found iron deficiency or low B12 status this explains your symptoms. Naturally it doesn't but it sounds so similar on paper, right? "Tiredness", exhaustion, weakness etc.

Same with psych comorbidities. I don't know of a single person who cured their ME with antidepressants or benzos.
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That may well be true too. That's the main study I remember because it was in the scoping responses especially (and this info is in the public domain so I can discuss it), but I know that other studies looking at misdiagnosis have been considered too.
 
Dr. Nath understandably does not want to discuss any findings yet. My impression is that they don't even want to analyze the data at this stage. Still, I'd love to ask him, "So, given what you've seen so far, what do you think of the deconditioning hypothesis?"
 
adambeyoncelowe said:
That may well be true too. That's the main study I remember because it was in the scoping responses especially (and this info is in the public domain so I can discuss it), but I know that other studies looking at misdiagnosis have been considered too.
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There was also an Australian study that looked at how many doctor-diagnosed patients met either Fukuda or ICC. And the results were impressive for all the wrong reasons.
Around 38% of Australians diagnosed with chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME) do not meet the Fukuda chronic fatigue syndrome definition used by the US government. More than two-thirds don’t meet the International Consensus Criteria for Myalgic Encephalomyelitis (ICC ME).
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https://meaustralia.net/2016/05/26/australia-2-in-5-cfsme-diagnoses-wrong/

Clearly misdiagnosis is a major problem.

However, I think the most likely explanation for all the other conditions found in the Nath study is that the patients in question had both a correct ME diagnosis plus something else. And they're excluding all those with something else to get the cleanest data they can.
 
Ravn said:
However, I think the most likely explanation for all the other conditions found in the Nath study is that the patients in question had both a correct ME diagnosis plus something else. And they're excluding all those with something else to get the cleanest data they can.
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Perhaps yes, and perhaps no. I am unsure whether these patients were excluded from the study (I would assume they were, considering the low number of patients that were admitted.

We are missing large pieces of the puzzle. We are heterogenous. We are stigmatized and neglected. Patients give up seeing a doctor all together and veer on to treating themselves instead.

There are so many things we do not understand about ME quite yet. We have been in this ‘perfect storm’ for decades now, hidden in plain sight.
 
Thank you to Dr. Nath for recognizing and stating pwME he has seen are devastated. He has not spent his career studying this illness. And yet it seems some mental health workers who have had a career focus in this area question whether ME is disabling. (As per deleted tweet noted in another thread.)
 
Could someone tell me if the initial diagnosis for these patients, that which was given to them originally, before any contact with NIH, was provided by a ME specialist? I looked at the NIH requirements for participant entry in the study, and did not find this as a prerequisite - that participants' ME must first be confirmed by a ME specialist.

My understanding is these people were more likely first diagnosed by their GPs. Which then explains the almost 30 percent misdiagnosis rate.

Thank you.

ETA: for punctuation
 
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adambeyoncelowe said:
That's the main study I remember because it was in the scoping responses especially (and this info is in the public domain so I can discuss it), but I know that other studies looking at misdiagnosis have been considered too.
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As far as I know, these studies like the one by Newton et al. looked at the diagnosis of patients who were referred to a ME/CFS centre. So the patients were suspected to have ME/CFS, probably by their GP, but turned out to have other conditions after examination by a ME/CFS specialist. Many of these were straightforward conditions such as sleep- or psychiatric conditions that were not excluded, as the Fukuda criteria prescribe. In other words: the misdiagnosis in these studies seems to be a fault of GP's who fail to consider all the exclusions, all the other diseases that can cause similar symptoms as ME/CFS, not a critique of diagnostic criteria.
 
Michiel Tack said:
As far as I know, these studies like the one by Newton et al. looked at the diagnosis of patients who were referred to a ME/CFS centre. So the patients were suspected to have ME/CFS, probably by their GP, but turned out to have other conditions after examination by a ME/CFS specialist. Many of these were straightforward conditions such as sleep- or psychiatric conditions that were not excluded, as the Fukuda criteria prescribe. In other words: the misdiagnosis in these studies seems to be a fault of GP's who fail to consider all the exclusions, all the other diseases that can cause similar symptoms as ME/CFS, not a critique of diagnostic criteria.
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I agree with what you say Michiel, and i will add that there are guidelines once the patient has been diagnosed with ME/CFS to only do minimal work up and sleep study is not recommended. They will only do the regular blood work, CBC, liver, kidney, Hepatitis and HIV screen, CRP and a few more to rule out according to the symptomatology. ME and CFS are dead end diseases. The main message is “You have arrived to your destination, stop looking”
 
wigglethemouse said:
http://simmaronresearch.com/2019/03/nath-intramural-chronic-fatigue-study/

These two sections caught my eye. The numbers are small but very intriguing

I've often wondered if many of us have a known rare disease. Rare diseases are so hard to diagnose and the medical profession does not have many diagnosticians checking patients for these despite what we see on TV shows such as "House". Hopefully Nath expands on this in his upcoming NIH Conference presentation

Not clear if these were filtered out, or part of the study. I would bet that most ME patients have not been tested for the full suite of autoimmune diseases - only the most common ones seem to be tested for...... Could this be why Ritux worked in some people in the Norwegian trials?

I strongly believe we need ME/CFS literate specialists - or even better Complex Disease specialists who work on patients that other doctors have discarded and are able to check for more autoimmune and rare diseases.
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ME is a convenient disease i.e. if your patient has unexplained fatigue then they have ME. I wonder if autoimmune disease is a similarly convenient diagnosis e.g. you may not even need to have an identified autoimmune antibody to be classified as having an autoimmune disease. An added complication is that Phair's metabolic trap predicts low Kynurenine which predisposes you to autoimmune diseases. Your high titre for autoimmune disease X could potentially due to the fact that your intracellular Kynurenine is low.

I wonder if methods like Mass Spectrometry could be applied to these "autoimmune diseases". E.g. NMDAR encephalitis has an autoimmune form (the autoantibody has been identified and patients respond to immuno-suppressants) and a non-autoimmune form. If you analysed enough cases of the autoimmune form then you may find a reliable biomarker/diagnostic test.

I'm suspicious of these "autoimmune diseases". Thankfully we have folks like Ron Davis working on this i.e. people with a vested interest in understanding and treating ME.
 
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