Michael Sharpe skewered by @JohntheJack on Twitter

[Dolphin]

It might be safer to go for a non-descriptive name, like Ramsay’s Disease or perhaps some other proper name like Matthees – it would be a great to be able to honour Alem’s heroic acheivements in some way. Perhaps one day there will be award named after him. I hope so.

From what I've heard, such names are no longer encouraged by the World Health Organisation for example.

 

[Barry]

One of my concerns is that someone will find a biomarker for most people diagnosed with ME but that it will not apply to me, and that I will then be left to rot as part of a forgotten minority.

Yes, I can understand that, and have pondered much the same thing regards my wife, though she does seem to tick many of the ME boxes. I think one thing is important: just supposing what you said came to pass, and a biomarker was found which clearly identified "ME sufferers" having a physical condition, but which you did not show. It would be really important that organisations such as S4ME still stayed on the case, and persevered supporting all those needing further research into further biomarkers. I suspect in reality, that if one biomarker was found that picked out a subset of ME patients, there would then be an enthusiastic hunt for more, to home in on further subsets.

 

[James Morris-Lent]

Yes, it is reminiscent of 'effort syndrome'. But the more I learn about ME the more I suspect that there is some very special process going on which exertion intolerance describes pretty well.

When the SEID moniker came out I had to chuckle a bit as it reminded me of my first attempts to describe my symptoms to a doctor.
"It's like... I just can't tolerate any sort of exertion or afterwards I get these horrible symptoms"
"It sounds like you have heartburn"
"No, no, it's, like, this... systemic thing..."

So it did resonate with me although the name hasn't stuck in the least.

One of my concerns is that someone will find a biomarker for most people diagnosed with ME but that it will not apply to me, and that I will then be left to rot as part of a forgotten minority.

Yeah. It seems inevitable but hopefully we can keep halving or quartering the 'unknown' slices.

 

[Graham]

How about Non-Wesselian Exertion Intolerance Syndrome?

How about Wesselian Intolerance Syndrome?

My son and I are labelled ME or CFS depending on who we see. My wife has the label "fibro". I have friends with EDS, some of whom also have the ME label. For one, the ME label may well change to EDS. The overlap between the conditions is too great to ignore.

I also notice that a significantly large proportion of them have others in the wider family with autism. Whatever is going on here is far from simple, far from cut-and-dried categorization.

I agree with Barry, that even if they get a marker for one particular group, this will only be a subgroup, and we would still have a responsibility to carry on fighting for all the others.

 

[arewenearlythereyet]

Personally I think that once one subset is identified and has a biomarker there is a very high likelihood that all the other people are thrown on the “must have burn out’ must be depressed/have anxiety’ scrap heap. It is only natural that research will gravitate towards the known biomarker group and this will swallow up all medical funding for a period of time. This will effectively set back research into the other subsets for years. The advocacy will be a lot harder to get funding diverted away from this primary group to help find answers for the rest. The politicians in their black and white way will assume the job is done.

Just being realistic ...this is why I’m hoping there is no such thing as subsets and that research focuses on the root cause and finds something that will help all.

 

[JaimeS]

I've gone through a cycle re: the naming thing.

I am probably one of few Americans actually diagnosed using the label "ME/CFS" because it was CCC that was used as the dx criteria, and that's what the report calls it.

Most Americans are diagnosed with "chronic fatigue syndrome", not ME or even ME/CFS, though popularity of the latter two is growing in the US.

After reading one of Jason's epi papers on how others clinicians view the respective names, I agreed that the name was a serious issue. I called it 'ME' and told people that was my diagnosis, because I knew people would view that diagnosis with greater respect.

But then I realized how many people had the CFS label while still having or even all of my symptoms: they received that label because of geography. Even conservative estimates show that over half of those who meet Fukuda also meet CCC. We could say that their diagnosis should shift then, but again it all depends on access. Fukuda certainly doesn't forbid PEM as a symptom, it just doesn't require it.

[Edit: @Dolphin pointed out that Chu's study showed that 99% of people with Fukuda have PEM; this is likely because of how those patients were recruited -- many from specialist centers in the US, from doctors who already understand what ME "looks like". I found an older study that has a likely more accurate percentage breakdown if you cast a wider net.]

Present day, anytime someone asks me about the disease, I say 'myalgic encephalomyelitis' if it's in passing. But if it's part of a conversation, I use 'chronic fatigue syndrome' and talk in depth about the severity of the disease: PEM, feeling like you've gone septic after 15 minutes of exertion, immune dysfunction, people unable to move and fed through a tube. Clinicians in the United States are going to see the CFS label everywhere. It's not leaving tomorrow. And so I want people to know that those with the label of 'chronic fatigue syndrome' may have a very serious presentation.

I would rather people understand the label of CFS in the US means a debilitating illness. This is the label my mother got when she was in liver failure and weighed 85-lbs. This was the label they gave EdPhD before she passed away. Did they not have "real" ME because of the label their doctors chose? Was it all a conflation? A mistake? Really? It was "just fatigue"?

I'm aware of the passel of disorders where I meet the diagnostic criteria, and am aware of at least six separate disorders with which I could have been accurately diagnosed: I'm well aware of what a crapshoot it is what label a patient receives. It's signs & symptoms + chance.

I'm cool with the "ME and CFS" idea, and the "ME/CFS" idea, and the "ME" idea, and the "whatever, I don't care if I get care" idea.

But I view the us versus them mentality as inhumane. It's clear to me that there is a group bent on creating a second class of patients: making one group into the 'undeserving ill' so as to elevate ourselves. I'm not okay with the narrative that there are 'real' patients who have 'ME' and 'false' patients who have 'CFS'. I'm not okay with CFS being a nonentity. There are people who do meet Fukuda without meeting CCC (that just-under-half) and they're still sick. I still want to help them. I still feel that they're part of our tribe.

I'm not okay with throwing them under the bus.

 

[Webdog]

I'm cool with the "ME and CFS" idea, and the "ME/CFS" idea, and the "ME" idea, and the "whatever, I don't care if I get care" idea.

But I view the us versus them mentality as inhumane. It's clear to me that there is a group bent on creating a second class of patients: making one group into the 'undeserving ill' so as to elevate ourselves. I'm not okay with the narrative that there are 'real' patients who have 'ME' and 'false' patients who have 'CFS'. I'm not okay with CFS being a nonentity. There are people who do meet Fukuda without meeting CCC (that 10%) and they're still sick. I still want to help them. I still feel that they're part of our tribe.

I'm not okay with throwing them under the bus.

Just to point out one of the absurdities in this debate. My doctor wants to diagnose ME, but the healthcare provider he works for does not allow an ME diagnosis, only CFS.

My provider provides healthcare coverage for roughly 4% of the entire US population. That's a lot of people to throw under the bus.

 

[Adrian]

I would rather people understand the label of CFS in the US means a debilitating illness.

I do wonder if we should have a strategy of taking over the CFS label and making sure people understand what it means in terms of a being a debilitating illness. Its partly a bad label because as it came out there was also a lot of effort to dismiss the seriousness by certain groups of doctors

But I view the us versus them mentality as inhumane. It's clear to me that there is a group bent on creating a second class of patients: making one group into the 'undeserving ill' so as to elevate ourselves. I'm not okay with the narrative that there are 'real' patients who have 'ME' and 'false' patients who have 'CFS'. I'm not okay with CFS being a nonentity. There are people who do meet Fukuda without meeting CCC (that 10%) and they're still sick. I still want to help them. I still feel that they're part of our tribe.

I agree with this. One thing worries me which is if people don't meet the 'typical' symptoms then do they have something that is a known disease that could be treated but has just been mis-diagnosed and ME.

Until we have an understanding of mechanisms or possible mechanisms we cannot separate groups with any reliability. To do so would be take arbitrary clusters of symptoms and promote some as different to others.
.

 

[Trish]

I agree that for support we need to all be under a big inclusive umbrella that embraces ME/CFS, ME, CFS, SEID, with and without PEM or other specific symptoms, and that we should all have access to decent medical care including proper differential diagnosis to pick up other co-morbid or alternative conditions, good symptomatic treatment and whatever emotional, financial and practical support we need.

But for biomedical research I think it's important that any one modest sized project that is trying to home in on causes, biomarkers etc. narrows down the descriptors of those included.

So some projects may only study female patients, others male patients, some only ones with severe cognitive problems, others only include ones who have pain, others focus only on patients with clear PEM/PENE.

And they should exclude patients with co-morbid conditions - to prevent confusing the biomedical findings with factors relating to that co-morbid condition rather than the ME. Ideally they would only take patients who are not currently taking any medication or supplements, or who can temporarily stop the medication for sufficient time before the blood draw etc, for something like metabolomics that is affected by these, but I guess that's not always realistic.

The OMF severely ill study, the NIH in-house study that limits it to less than 5 years illness, and some studies that only take female patients are examples of these.

This focusing in on narrow groups seems to have a better chance of finding biomarkers, which can then be tested on the wider group to see whether we all fit that particular category or not.

 

[Amw66]

Yes, I like ME/SEID more than ME/CFS. Chronic Fatigue Syndrome is a terrible name: it is too easy to think fatigue is the main problem. Lots in the medical establishment aren’t going to accept “myalgic encephalomyelitis” on its own any time soon.

People can try to come up with all sorts of fancy names but it will likely be hard to get any high profile official committee to approve them any time soon.

It is dominated by fatigue in definitions and lists of symptoms and does noone any favours.
This is what has muddied the waters for so long

 

[Inara]

Will I, when the time comes and there's a biomedical test announced, actually show up on it? What if I don't?

This is a "danger" we all live with, be it diagnosed with ME, CFS, SEID, CF postviral CFS or CFIDS. That doesn't mean we should stick to names that are belittling and that are putting "fatigue" in the center. It's something I only really understood some days ago. Nearly everybody - including researchers - view fatigue as the hallmark symptom (just look at all the abstracts and introductions). If I tell people fatigue is not the problem, they are puzzled because it's called chronic fatigue syndrome. This is an ambigous message which is not very advantageous with regard to advocacy.

In Germany, ME isn't known, people with CFS are tired and need psychological treatment. One patient organization is trying to change that. We need that change.

No matter how, we need to get away from the fatigue thing.

@Lucibee cited a text about The Lancet where it was asked whether to use ME/CFS or CFS/ME. This ended 3 to 2 (AfME, MEA, and a third PO vs. Wessel&White), so the majority was for ME/CFS. But the Lancet followed Wessely&White. This shows where the power lies.

With regard to this, too, it would be a success if we could dump CF(S).

 

[Inara]

Patients who objected to SEID objected specifically to the 'exertion intolerance' bit, IIRC, because they thought it would make us vulnerable to sounding as though we were just lazy (i.e. chose not to tolerate exertion). The term might sound different to doctors but this was the fear about how it would sound to the public.

When I heard SEID the first time I thought exactly this. At that point I wasn't diagnosed yet but I already knew in my guts it's something physical. I thought it sounded like stress intolerance, and that sounded like it's psychological.

 

[Hoopoe]

In the real world, in most countries at least, there is probably a huge problem with patients that are somewhere on the ME/CFS spectrum not being diagnosed. That means the full extent of the problem is obscured. It also denies these patients the chance to contribute to research and advocacy.

 

[Keela Too]

No matter how, we need to get away from the fatigue thing.

This!

Things are now hopefully moving away from the psychosocial approach, and it would be best if the whole “fatigue” premise could be scrapped at the same time as the psychosocial premise withers.

 

[Amw66]

This!

Things are now hopefully moving away from the psychosocial approach, and it would be best if the whole “fatigue” premise could be scrapped at the same time as the psychosocial premise withers.

Perhaps check out how charities represent this - apart from tymes trust which proffer fatiguability, fatigue tends to be the first symptom on the list . Perhaps they could lead

 

[Dolphin]

Once in a decade, we seem to get a chance to get rid of “chronic fatigue syndrome”. In the early 2000s, there was neuroendocrineimmune dysfunction syndrome (with ME as a subgroup); in the 2010s, there was systemic exertion intolerance disease. It seems to me, possibly the biggest reason we still have “chronic fatigue syndrome” is because of the people who objected to these.

The perfect can be the enemy of the good.

 

[Snow Leopard]

Once in a decade, we seem to get a chance to get rid of “chronic fatigue syndrome”. In the early 2000s, there was neuroendocrineimmune dysfunction syndrome (with ME as a subgroup); in the 2010s, there was systemic exertion intolerance disease. It seems to me, possibly the biggest reason we still have “chronic fatigue syndrome” is because of the people who objected to these.

The perfect can be the enemy of the good.

The problem is that we don't have processes to firstly identify what name will be most useful in terms of patient preferences and secondly test potential names across the various interested patient groups around the world to see how they are perceived and how well they are liked.

One thing that most of these names have in common: they have been decided by a small group of people and often these people aren't even patients.

 

[Cinders66]

Once in a decade, we seem to get a chance to get rid of “chronic fatigue syndrome”. In the early 2000s, there was neuroendocrineimmune dysfunction syndrome (with ME as a subgroup); in the 2010s, there was systemic exertion intolerance disease. It seems to me, possibly the biggest reason we still have “chronic fatigue syndrome” is because of the people who objected to these.

The perfect can be the enemy of the good.

I agree. I was pro SEID and hounded off a group for "betraying PwME", despite being bedridden with classic ME and just wanting to shift away from the CFS mess. It was a missed opportunity that I don't understand in the uk, it's not like we are winning the ME for name battle or even trying to. Even today there's bitter accusation against Jen brea and Solve for NOT condemning IOM & SEID. SEID was created to take us away from fatigue onto PEM & supposed to just be temporary

However I'm never in favour generally of broader umbrellas. Yes we can group as recognised conditions in the way Parkinson's and MS do but as someone severe I very much feel that the concern to make sure the fatigued had a label and care has been of great detriment to the severe who get totally marginalised. Even today , the focus is on fatigue, yet ME has the potential to be utterly devastating with disability not even recognised. And what does the research be about, the lowest common denominator of that umbrella - fatigue and way to "manage" it. I don't want to abandons the MUF to the psychologists but trying to carry them with us to save them just sinks us AFAIC , it just dilutes our core message of complex, systemic disease typified by abnormal response to exertion. We can fight for ourselves as well as discredit the psychologisation of the medically unexplained, there might be overlaps too but we need to carve out a recognisable illness.

 

[Jonathan Edwards]

There is always the option of Post exertion malaise syndrome (PEMS).
OR ME/PEMS to provide historical continuity.

 

[Snow Leopard]

The problem is that well, 'malaise' is one of those objectionable words too.

The central characteristic of CFS is fatigability, rather than fatigue too, which suggests they misnamed the symptom complex in the first place.