I think the IoM report may have used similar language in that they were saying a diagnosis is due to the characteristics in the criterial (things like PEM) (perhaps with suitable exclusions) rather than because other causes can't be found.
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Doctors with ME: Putting it into Practice: What NICE ME/CFS means for GPs
- Thread starter Barry
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I think the IoM report may have used similar language in that they were saying a diagnosis is due to the characteristics in the criterial (things like PEM) (perhaps with suitable exclusions) rather than because other causes can't be found.
Barry
Senior Member (Voting Rights)
So maybe the new NICE guideline has brought us further forward than I realised, in its updating and clarifying of the diagnostic criteria.
I think I have been misunderstanding what is meant by a positive diagnosis. But from this thread I think a positive diagnosis simply means:
Importantly, the new guideline makes it far easier to exclude psychiatric illness as a primary cause of an ME/CFS patient's illness; that is a major advance, and no doubt the reason so many clinicians are finding it hard to get their heads around.
So if a clinician overrides what the NICE guideline strongly points towards for a given patient, because their clinical experience biases them to a psychological diagnosis, then they should beware. Adherence to the NICE guideline may not be mandatory, but if they make a seriously wrong diagnosis by ignoring it, then I think they could be in a very uncomfortable legal situation.
I think I have been misunderstanding what is meant by a positive diagnosis. But from this thread I think a positive diagnosis simply means:
Unambiguously identifying what an illness is, even if that partly relies upon the exclusion of other illnesses.
Importantly, the new guideline makes it far easier to exclude psychiatric illness as a primary cause of an ME/CFS patient's illness; that is a major advance, and no doubt the reason so many clinicians are finding it hard to get their heads around.
So if a clinician overrides what the NICE guideline strongly points towards for a given patient, because their clinical experience biases them to a psychological diagnosis, then they should beware. Adherence to the NICE guideline may not be mandatory, but if they make a seriously wrong diagnosis by ignoring it, then I think they could be in a very uncomfortable legal situation.
Kitty
Senior Member (Voting Rights)
Yes, I agree (though doctors might use 'unambiguous' reluctantly!), but I'm not sure the second part of the sentence even needs saying. GPs usually have to exclude other things, either because it takes a while to get a full symptom profile from the patient or because clinical guidelines say they should.
New-onset fatigue must be the most frequent complaint in people who're developing ME, but it could be caused by anything from pregnancy, to thyroid dysfunction, to cancer. Pregnancy's often at the top of exclusion lists if a patient might be capable of conceiving, but GPs will often also rule out basic stuff like vitamin or mineral deficiencies.
On the other hand, they can't justify sending patients with unclear symptoms for investigations that cost hundreds of pounds until they've excluded more mundane things first. My mate's MS came on slowly and the symptoms were confusing, and she had all sorts of tests before she was referred for the MRI and nerve conduction studies that confirmed it.
Whether it's a poorly human or a malfunctioning boiler, exclusion's a routine process...I don't think we need get caught up by it.
Indeed—hopefully this will weigh into their decision-making without a patient needing to go through the hideous process of filing a legal claim!
As @Adrian noted, the IOM used similar language - ME is a positive diagnosis, not an exclusionary one in the sense that it relies on positively identifying features like PEM, unrefreshing sleep, substantial impairment compared to pre-illness.
In parallel with identifying those features, a differential diagnosis is required to identify alternative explanations. Previously, in the US, Fukuda was often used clinically as a wastebin of the leftovers once the doc decided he was done with "excluding".
In parallel with identifying those features, a differential diagnosis is required to identify alternative explanations. Previously, in the US, Fukuda was often used clinically as a wastebin of the leftovers once the doc decided he was done with "excluding".
I think this is an excellent summary.
Particularly appreciate the bit about Pervasive Refusal Syndrome not even being a formally recognised diagnosis (section 11).
Whatever their failings, DWME are likely to be among our most powerful allies. So let's not alienate them. Patients have made plenty of mistakes ourselves along the way.
Particularly appreciate the bit about Pervasive Refusal Syndrome not even being a formally recognised diagnosis (section 11).
Whatever their failings, DWME are likely to be among our most powerful allies. So let's not alienate them. Patients have made plenty of mistakes ourselves along the way.
While i accept that ME is not a diagnosis of exclusion, we need to keep in mind, in my view, that 28% of the NIH cohort, which was vetted by several of the international experts, were found to have serious diagnosis such as cancer, vasculitis, multiple sclerosis, just to name a few and excluded after a visit at NIH.
Giving a ME diagnosis should not mean for doctors to sit on their behind and refrain from listening to the patient and looking for differential diagnosis if applicable. We do know there is a wide array of symptoms associated with ME and from my point of view, patients tend to associate all kinds of symptoms with ME when it may not be so.
Edit to add: i am also reminded of a ME MRI study from Australia that found 2 of their subjects with a major brain defect, one missing his cerebellum, and they would not have been found out if they had not entered the study.
Giving a ME diagnosis should not mean for doctors to sit on their behind and refrain from listening to the patient and looking for differential diagnosis if applicable. We do know there is a wide array of symptoms associated with ME and from my point of view, patients tend to associate all kinds of symptoms with ME when it may not be so.
Edit to add: i am also reminded of a ME MRI study from Australia that found 2 of their subjects with a major brain defect, one missing his cerebellum, and they would not have been found out if they had not entered the study.
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lunarainbows
Senior Member (Voting Rights)
And in many cases, including the conditions you’ve mentioned above but also others, not giving the correct diagnoses or not referring onwards, can have severe or even life-threatening repercussions for the patient.
This may be true in many other conditions & when doing differential diagnoses for those, but in my view ME is very different. That’s because, unlike other conditions which have biomarkers and better known mechanisms, we know very little about the mechanisms behind ME symptoms (especially PEM and severe fatigue), as well as autonomic & cognitive disturbances in ME. And yet we assume that they do not occur together, or sometimes even apart (esp PEM), in other conditions. We are taking these symptoms together to be diagnostic of an entity called ME only, when they might not be.
and the reason I’m talking about this is because it actually does end up causing problems sometimes. my diagnosis was confirmed by doctors including ME expert along the way using the positive diagnosis method - and now it turns out it may not be the case. i went into routine surgery thinking I was safe because patients with ME typically do not have problems following surgery - but unfortunately, people who have the condition which I’m now probable diagnosed with, actually do - to the point of having multiple organ failure (which I had) and sudden cardiac death, so different precautions need to be taken during surgery, which did not happen in my case. And so I nearly lost my life. And my family have been left with PTSD or similar. Yes this sort of situation may be rare but still it’s worth mentioning, due to the severe repercussions otherwise of thinking these symptoms are uniquely positive identifying factors for ME. Because when doctors think these are positive identifying factors, the reality is that they will stop looking because you already have been told what explains your symptoms.
We’ve already seen on the forum, and elsewhere like NIH, other people who have had PEM and fit ME criteria, but were diagnosed with other neuro-muscular or different conditions (and in some cases, even treated upon which symptoms got better).
So I simply do not think we have enough knowledge to say these criteria are positive identifying features yet. I agree it’s not a wastebasket diagnosis, but I do not think the criteria used to diagnose ME can really form a truly positive diagnosis at the moment, not without a biomarker or more research. And it’s ok to talk about that, it’s probably important that we do sometimes.
Well said @lunarainbows, not just what i quoted you with, but the whole post. We absolutely deserve to be investigated and reconsidered when new symptoms surface. Often time we feel shamed by the health care professionals, because you know we have so many symptoms and they don’t make sense together to them. i hope that with the multiple facets Long Covid manifests, and sadly with the fact that many health care professionals may be affected which may render them more credible than others, i hope we are turning a corner.
Ariel
Senior Member (Voting Rights)
I am not sure about this. The threshold for being able to say that we can made "positive" diagnoses of ME shouldn't be so high that it's impossible to make a misdiagnosis, or miss something. There is always the possibility for misdiagnosis.
Of course, there should be awareness of this and more research into what causes symptoms such as PEM. The mechanisms may overlap even if PEM is not a feature unique to ME. This would be interesting, but a case where even more research may not help us pick out ME uniquely with no errors. You don't want the impression that ME is harder to diagnose than it actually is, in relation to other illnesses.
There seems to be enough evidence for now that these criteria pick out a distinct condition. That is not to say that this is all there is to say about it, but as long as people don't put things into an "ME" box post-diagnosis and just abandon patients, ceasing to monitor them or considering their particular cases, the situation seems vastly improved by the "positive diagnosis" model. The problem seems cultural - people can still treat "ME" as a "wastebasket" diagnosis in some sense - as a way to just stop asking questions even if there are "positive" criteria to learn, and more generally in the sense that they mentally switch off when ME comes up (as they seem to now). There needs to be a shift in culture around treating ME patients and heightened awareness of the actual symptoms re: positive diagnosis model would seem to actually help awareness of how this may overlap with other conditions to make a diagnosis or realize that the diagnosis is wrong.
Sorry this ended up being a bit more convoluted than intended. x
Barry
Senior Member (Voting Rights)
I wrote it more for my own understanding to be honest, as it helped me to better understand.
Sly Saint
Senior Member (Voting Rights)
I have put the whole blog/article (unedited) into a pdf (available with permission from @EducateME).
well written and clearly laid-out.
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Wonko
Senior Member (Voting Rights)
It just opened for me.