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

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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.
 
wingate said:
I would be curious to know more about the rare diseases these patients were determined to have.

I wonder what kinds of things they looked for aside from the common things that may be ruled out before an ME/CFS diagnosis is made at the doctor's office (and not just in a clinical study).
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I was one of the six patients the NIH team excluded from the data analysis. My second diagnosis, made by the NIH team, is 'atypical myositis.' I have probably had the myositis for as long or even longer than the ME (which started suddenly in 2012). I had a droopy right eyelid pointed out to me by an eye doctor about six months earlier than the ME, and that can be an early sign of some types of myositis.

I had been thoroughly evaluated by neurologists before getting an ME/CFS diagnosis by Susan Levine and Derek Enlander, and had several EMGs (electromyograms - used to diagnose muscle disorders). EMGs are usually - but not always - abnormal in myositis. The reason everyone else missed the myositis is because, a) My EMG's were read as normal, and b) whatever type of myositis I have does not neatly fit into current categories. It was diagnosed only after muscle biopsies were performed at Stanford and NIH. No one ordered a muscle biopsy earlier, because the EMGs were negative. Neurologists are not going to order expensive surgeries (that's what a muscle biopsy is) without supporting evidence.

I do have both disorders. I definitely qualify as having ME/CFS under the most stringent criteria, as determined by the five-person expert adjudication committee adjourned by NIH. I also have some sort of myositis.

Edit: Of course I do wonder if an astute neurologist might have suspected I had a muscle disorder in the absence of the ME/CFS symptoms and made a diagnosis much earlier. But I'll never have an answer.
 
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B_V said:
Ok, let me clarify. I got something wrong. The 200 number is the approximate total number of patient contacts after initial NIH phone screening. Sixteen of those are in the study. Some did not qualify due to self-diagnosis, gradual onset illness, illness longer than 5 years. The rest may qualify but disappeared after some initial contact with the patient coordinator, Angelique. She is very responsive and the phone number goes right to her desk so I don't think people are getting stuck on hold. Maybe voicemail once in a while. Anyway, I don't have an exact number of how many people have called in, made it past initial screening, been re-contacted by NIH and then disappeared. Apologies for the imprecise info.
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I am pretty sure Dr. Walitt goes over all of these numbers, including how many did not respond after being invited, in his talk at the ME/CFS conference at the NIH in April 2019. If someone was interested in those exact numbers, you could look up the video recording and Dr. Walitt's talk.
 
duncan said:
Me, too. I'd wager many of us do.

Agreed. The question for some is, does the NIH want to? It may, and I hope that is the case.
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The NIH is many people and many groups. I don't think we can lump them all together saying "they" want to or don't want to help. From my experience as a patient in this study, I felt that the people involved in the study that I met definitely wanted to move us forward and be as helpful as possible, but proper research requires certain steps and certain sequences to be followed, so it will not be as fast as most of us wish for.
 
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Allele said:
Yes, it's a shame there can't be a <5yrs group and a >5yrs group. The illness looks so different over time, and I think that's one (of many) reason(s) we're having trouble with the diagnostic criteria. It would be so interesting to compare the data from oldies and newbies.
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This is only the first step. From my conversations while participating in the study as a patient, as long as they find useful data, they would try to study other sub-groups later on, such as more severe patients, etc.
 
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