Michael Sharpe skewered by @JohntheJack on Twitter

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

 

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.

 

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.

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

 

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.

 

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.

 

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.

 

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.

 

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

 

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).

 

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.

 

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.

 

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

 

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.

 

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.

 

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

 

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.