Of the ICC-ME authors who have subsequently published in the field (based on PubMed), all have subsequently used ME/CFS and/or CFS

I interpret as a flare of both immune and neurological symptoms which feels like what is happening. We may not know exactly what’s happening but how else to describe it? We need some way to speak about our experience. I feel a bit stuck if we follow your suggestions.

 

My opinion is that there are many issues here. First, that we need a term that, as accurately as possible, describes the whole range of patients experience, and that, secondly, is evidence based. Certainly I'm of the opinion that PENE does/is neither.

For my part postexertional neuroimmune exhaustion does nothing to describe my experience, which isn't to say that post-exertional malaise does a brilliant job but is vague enough to be able to cover what I do experience; for me "post exertional symptom exacerbation" would be a better, but still not ideal, fit. And I have concerns that your average GP, if told by a patient that they were suffering postexertional neuroimmune exhaustion, would not receive that well at all, especially given the lack of evidence for the terms used.

And speaking about the wider situation, this whole can of worms exists because we don't have enough scientific evidence to say much with any certainty, other than there is a large group of people who are ill in a broadly similar way and are in desperate need of help.

 

Yes true. I wouldn’t dare say PENE to a GP. Post exertional symptom exacerbation is the basic truth. We desperately need more facts! It’s very hard to advocate for ourselves as things stand.

 

Thinking about this, I would say to a GP that I have neurological symptoms and also immune symptoms. I don’t think we have to know the cause or mechanism for someone to have their symptoms acknowledged as being a certain type, or of interest to a certain specialty.

 

Sure, each individuals symptoms should be appropriately accepted and treated, but the point is that the term postexertional neuroimmune exhaustion is unproven and inaccurate for many.

 

Even better would probably be to explain what these features are like.

E.g., I feel really flu-like, with swollen glands and sore throat, muscle aches and nausea. My voice becomes hoarse. I also struggle with bright lights and smells. I find it harder to find my words, and I struggle to concentrate. I find I become more clumsy and lose my balance. Etc, etc.

If you just say 'I get immune and neurological symptoms', I doubt you'd convey the nuance of the situation.

The worst case scenario, if you use terms like 'neurological' and 'immune', is that a doctor might make assumptions about you trying to 'medicalise' your symptoms (which is a common refrain from the MUS hymn sheet).

In my experience, you have to gently lead the horse to water, and let it think it's its own decision to drink. You probably don't want to reveal that you may know more than said horse does unless asked.

 

I would like to add that we do not need to have clarity on the illness to justify that a serious and credible effort is made to help us. How exactly that looks like is subject to debate but there should be no debate that people that are as ill as we are deserve the same access to research and healthcare that others with similar illnesses, and of the same quality (as good as is possible with current knowledge and technology).

If there is no clarity, then it must be created.

 

I agree, but you're right in that it doesn't capture the additional symptoms. For me at least, there are symptoms that only appear during PEM: for instance, being awake all night with a speeding brain, needing to pee every 30 minutes, and having painful joints, swollen throat glands, and burning muscles when lying down.

(As a bit of an aside, I've often wondered why it only seems to be the glands at the front of the neck that are affected. If I have a nasty cold, I'll also have swollen glands in my armpits and sometimes at the back of my neck – never known this happen in PEM, though.)

 

This is an important discussion to have but there are some points I think need to be taken into account.

1. ME/CFS has three different meanings and it is difficult to know without asking which meaning is being used.

ME/CFS: ME & CFS as two different conditions (I have asked around and was surprised to find how many feel that is what this means.)

ME/CFS - CCC: The 2003 Canadian Consensus Criteria used the ME/CFS label so I would expect a LOT of those studies listed in this thread used that label BECAUSE the patient selection was based on the CCC. During those years I had no real issue with the term ME/CFS because most of us felt the CCC (despite not being intended for research) was a HUGE improvement over the 1994 Fukuda definition labeled CFS. From 2003 to 2015 that made good sense to use the label attached to the criteria that was used.

ME/CFS - SEID: Starting in 2015 when the community rejected the SEID label, ME/CFS became attached to the IOM report's definition. This is a FAR cry from the CCC patient group and I feel the IOM is inadequate to use either for research or to describe the disease I deal with.

Here's what I don't know... for those who don't feel the ICC fits them, are they satisfied that the IOM describes their disease and is the limited testing and treatment approach satisfactory?

I personally feel compelled to either reject the ME/CFS label or when I do use it to clarify if I mean ME & CFS, ME/CFS - CCC or ME/CFS-SEID.

So the question I have for anyone in this thread, what do you mean when you use that label?

I use ME to refer to the disease I have and in regard to research I want my $ to go toward and the advocacy I do to be labeled ME and use the ICC. Maybe I'm not talking about the same thing those who use ME/CFS are talking about.

As for Post-exertional neuroimmune exhaustion. That is a VERY apt description for my experience. When I overdo my immune system crashes, my cognition crashes along with a lot of other unpleasant symptoms. This is an experience I have had hundreds (thousands) of times. The fact that these experts who had vast experience with a wide variety of patients created this label that describes my experience so well, indicates there are others who are like me having this experience.

So what do we do about those who say PENE nor the ICC fits their experience? It comes across that I'm being told I should stop using the ICC and PENE because it doesn't fit their experience.

Isn't it more fair that we each respect that we may not be talking about the same disease experience and to please respect that for those who feel the ICC fits their disease that there should be a recognition of existence of ME as per the ICC?

I would like to believe that no one in this community is trying to be divisive on purpose. Each of us is coming to this from our own point of view and one thing this thread is making clear is we may not be talking about the same disease (or at least not the same disease experience).

This group is "Science for ME - Where science and the ME/CFS community meet"

Which ME/CFS is that? ME & CFS, ME/CFS-CCC or ME/CFS-SEID.

And maybe this group should be called Science for ME/CFS (with a clarification about which ME/CFS that refers to)?

If this forum could find a solution to this divisiveness and put clarity first as a priority for moving this community forward, we could have a huge impact on the mistreatment of patients no matter whether they are labeled CFS, ME/CFS or ME.

Edited to add: I am in the US. It is becoming quite clear that the differing use of labels across the world is adding to the significant challenge of agreement in the community. In the US I have G93.3 code in my medical files and that affects what testing and treatments my insurance will cover. So on a personal medical level this issue is very important to my getting the care I need paid for by insurance.

 

Thought it was interesting to see the level of support for these two independently posted Twitter threads on the posters use, or not, of the term ME/CFS.

https://twitter.com/user/status/1232361829227167744


https://twitter.com/user/status/1221794037180588033

 

For some of us the name and diagnostic code has no influence on care or insurance coverage.

That insurance will pay for some treatment for ME doesn't seem to be based on a sensible assessment of evidence to me, as we have no understanding of the mechanism and there isn't any treatment truly known to work.

 

I think it simply means the patient population that has been selected with CFS and ME criteria. If you look at the 1992 book Byron Hyde edited the term ME/CFS was used in this way. The Chief Medical Officer Report from 2002 in the UK used the term CFS/ME in a similar way. So that's before both the CCC and SEID criteria.

When it comes to deciding research criteria I think we should try to determine what's best for research, not which criteria best fits one's own illness or what makes it easier to obtain insurance reimbursement in a particular country. I don't really know if the ICC, CCC or SEID criteria are the best criteria to use in research because we have so little data and comparisons.

You speak about clarity @Colleen Steckel but the ICC describe ME very differently than how Melvin Ramsay and the subsequent London criteria originally described it. The former requires many more symptoms than the latter while the post-exertional muscle weakness Ramsay focused on is not a requirement in the ICC. So using the term ME doesn't do away with ambiguity and lack of consensus.

EDIT: When it comes to tests, biological abnormalities or treatments described in the ICC and other documents, I and others on this forum, who try to follow research as closely as possible, think these are commonly overstated.

I don't quite understand why it's so important to you that researchers use the ICC rather than say the CCC, as many prominent researchers in the field now seem to do. Given that up to 80-90% of US patients are undiagnosed, research funding and expert clinicians are scarce and that many clinics are offering treatments like GET that could be harmful I don't see why the top priority should be the ICC versus CCC debate...

 

I hear what you are saying and realize your perspective is from the UK. Part of what I was trying to explain in my comment is that while it may not matter to those who are in the UK which criteria or description is used it absolutely impacts the medical care I can get here in the US.

I keep seeing these conversations including statements that "it doesn't matter what label/criteria we use - let's wait for science" and it took me a while to wonder why someone could think that. It seems to me that those who express lack of concern for labels/criteria fit into the following categories.

1. Live somewhere that the label/criteria doesn't affect what medical care they get. I know some in the UK express importance of proper name/criteria but others indicate it doesn't matter.

2. Live in US (or anywhere) and have access to experts in the field who don't need clarification of a label to treat the patients they see. They don't need a disease label to look up how to treat. They already know how to treat.

3. Researchers seem to use a wide variety of labels in their published paper introductions, but when it comes down to which patient selection is done they are focused on criteria.

4. Journalists... I think we all know most journalists have no clue about the harm they have caused. We still see things like Yuppy flu, Chronic Fatigue, etc. (I was recently told by a doctor a new name in my area given to a man she saw was "weak man syndrome". I think we all agree that this is a label we would all reject.)

To further clarify - In the US we have hundreds of different insurance coverage methods so while my experience may not be reflective of everyone in the US, I know I'm not alone when I say it really does matter to my personal health care which label and which code my doctor uses. I do NOT have access to experts so for 30 years I've used any avenue I could find to get the health services I need. By far the most effective tool is the IC Primer and the G93.3 code.

If I go to a doctor here and give them the "ME/CFS" label they will have to choose whether to give me a CFS code or an ME code. Since the ME code is in the neurological section and the information in the IC Primer is recognized as being connected to the ME code, I can use that to get MUCH better care than if the doctor gives me a CFS code which doesn't coincide with the Primer. The Primer states it does not apply to CFS.

For me this about being able to get the medical care I need. I keep hoping patient care will be the most important part of any discussion in this (and any ME) forum. My advocacy is based on language/narrative that helps patients get the best care.

 

Thank you for replying. It sounds like you use ME/CFS as ME & CFS. I would agree that is a viable approach as it does indicate there is a distinct disease ME.

Clarity in the context I used it was making sure ME/CFS was clarified. It is clear that much of the research (at least prior) to 2015 referred to the CCC.

Again maybe the ME/CFS problem is more a US issue? In the US ME/CFS is now attached to what is on the CDC website. What is on the CDC website is SEID. I reject SEID as a good description of ME. It is much more closely aligned to CFS-Fukuda.

As for research, I think CCC is a MUCH better option than CFS or SEID. NOTE: SEID should not be used as a research criteria. It was never intended to be that as it was purposefully created as a broad criteria to catch as many people as possible.

We have seen some good research using the CCC. While I "prefer" the ICC, I won't ignore research using patients who fit the CCC.

 

I appreciate you recognize that for those of us sick longer this has had a deep impact. 30 years last August... I have good reason to be fed up with the name.

 

The WHO classifies both CFS and ME with the same code under other disorders of the brain/nervous system. This is the case for the current ICD-10 and the upcoming ICD-11. Many countries have followed that classification. It's mostly the US modification that classifies CFS and ME differently.

So I think the most reasonable solution for the problem you describe is to demand that the US follow the international consensus and WHO classification. That would be in line with research and expert opinion as studies have found CFS patients to be more disabled than patients with other chronic conditions and, given the symptom presentation of CFS, involvement of the central nervous system is suspected.

That's why I was rather frustrated back in 2018 when ME Advocacy’s argued for CFS to remain in its current ICD-10-CM classification under R53.8 - Other malaise and fatigue.
https://twitter.com/user/status/1061926997083983874


https://twitter.com/user/status/1061985195526709248