Michael Sharpe skewered by @JohntheJack on Twitter

[Trish]

I was diagnosed with ME by a GP in the UK in 1990. About a year ago, I was in my doctor's office and glanced at the computer screen, and saw 'Chronic fatigue syndrome' on the screen as my main diagnosis.

I had a home optician visit and was asked my diagnosis. I said ME. He said, ''Do you mind if I write that down as Chronic Fatigue Syndrome, it's easier to spell?''
I was too exhausted from the eye test to object and explain.

I think the word has gone around the UK medical establishment that when you hear 'ME' from a patient, you write down 'CFS'.

 

[Lucibee]

I think the word has gone around the UK medical establishment that when you hear 'ME' from a patient, you write down 'CFS'.

This happened in 1996. Here is that Lancet editorial again - Frustrating survey of chronic fatigue - which gave way to The Lancet's change of stance on ME.
This led to the disappearance of ME in the pages of TL and elsewhere.

The editorial was brought up again in a commentary in 2002 as a result of a new report being published.
This was followed by correspondence from Jane Colby and others, including the Dutch group, who seem to be at odds with the Brits on nomenclature - but importantly - not on treatment.

The "conflation" was always a compromise, and as such, it doesn't really mean anything - in that it means different things to different people.

 

[alex3619]

I think the word has gone around the UK medical establishment that when you hear 'ME' from a patient, you write down 'CFS'.

This happened to me in hospital, in Australia, on my hospital intake form. I wrote down ME, it got recorded as CFS.

 

[Revel]

I was in my doctor's office and glanced at the computer screen, and saw 'Chronic fatigue syndrome' on the screen as my main diagnosis.

Same here, @Trish. If I ever use the term "ME" during a GP appointment, I get the feeling that he is resisting the urge to roll his eyes, and he usually manages to slip "CFS" into the conversation in a subtle attempt to correct my error.

I wrote down ME, it got recorded as CFS.

The last couple of times I have been to hospital, neither ME or CFS was recorded in my notes (the pen temporarily ceases to move across the form as I divulge this aspect of my medical history, it's of no importance, in their opinion). They did write down that I had POTS but, since nobody knew what that actually was, it didn't help me much.

 

[alex3619]

I get the feeling that he is resisting the urge to roll his eyes

My, he could resist, many don't!

 

[Lucibee]

This tweet adds a bit more to the use of CFS/ME terminology:



I've quoted the relevant bit of the document here:

Again on Saturday 12th January, Stephen Holgate sent another email: ”To all: One point that I would like a view on is the terminology: CFS/ME or ME/CFS, NHS, NICE and MRC use CFS/ME. I wish to be consistent so can I have a view from all please. I will then make any changes (including the name of the collaborative!)" (quote 6)

Simon Wessely was on the list of recipients. He replied: “Thanks for asking. I think we should stick with CFS/ME frankly. Keeps it in line with MRC and NICE. Journals certainly only use CFS. USA doesn’t use ME at all. CFS/ME seems to be the best compromise. Nervous that ME/CFS would alienate one or two researchers not actively involved in area but who you would like to see involved.” (quote 7)

This view was endorsed by Peter White “...... I agree with Simon that CFS has to lead. The hybrid CFS/ME allows the broad church that encourages generalizable research, while allowing stratification where necessary.” (quote 8)

Sonya Chowdhury, CEO of Action for ME (AfME) replied “ ... my preference is that we use ME/CFS and I suspect if we were to ask members, there would be a preference for this form from them too. However, I am prepared to work with either as the importance here is consistency and collaboration and if the general view differs, I will go with the majority.” (quote 9)

The MEA stated a preference for ME/CFS but that they also were “happy to accept the majority view on this”. (quote 10)

MERUK’s preference was also for ME/CFS, they added “we use ME/CFS as do the patient-based campaigning charities.” (quote 11)

On 21st January Stephen Holgate emailed the group, “After undertaking a poll for preferences of a title, the CFS/ME terminology seems to be the option most wish to go for. It seems that the NHS, Research Councils and NICE use this terminology as do the majority on Pubmed. I hope we can now accept this.” (quote 1)

The Collaborative thus became the UK CFS/ME Research Collaborative (UK CMRC).

SW says "Journals certainly only use CFS" - pretty sure that's because he told them to!

 

[Adrian]

The last couple of times I have been to hospital, neither ME or CFS was recorded in my notes (the pen temporarily ceases to move across the form as I divulge this aspect of my medical history, it's of no importance, in their opinion). They did write down that I had POTS but, since nobody knew what that actually was, it didn't help me much.

It may be that the notes were being written by someone who knew if they put down ME or CFS then any other things wouldn't be taken seriously.

 

[Robert 1973]

I sense I’m in a minority here but I’m not at all attached to the ME label. It’s much better than CFS, and I’m happy for it to be used, but equally I am not at all confident that everybody who meets the diagnostic criteria for ME (whichever critera is used) has the same illness. Whilst the CFS label is deeply unhelpful and trivialising, it also concerns me when the ME label is used to imply a higher degree of certainty and understanding about the illness (or group of illnesses) than is true.

My feelings about this may be partly due to the fact that my symptoms appear to be somewhat atypical. Despite having been severely affected for many years, and having been diagnosed by at least 4 non-psychiatric NHS consultant ME/CFS specialists, I’m not at all sure that I have what is sometimes termed “classic ME”. Very often I find that I don’t relate to other people’s descriptions of their ME, and I very seldom hear people describing the symptoms which have caused me the most distress. That may be because we have different manifestations of the same illness, or it may be because we have different illnesses. 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.

I am deeply opposed to lumping anybody with any sort of chronic fatigue or unexplained symptoms under the same diagnostic umbrella, but I also feel it is important to recognise that among those diagnosed with ME/CFS, whose illnesses are organic and whose symptoms are made worse by exertion, there may be people suffering from different conditions. I fully understand and agree with the need for better diagnosic criteria, but if people are unwell (and particularly if they are very unwell) and do not meet those strict criteria they must not be abandoned – or left on the ship as @Woolie put it.

I am very reluctant to write about my symptoms but I feel it might be helpful for me to give an example of what I’m talking about. Despite my diagnosis, which implies myalgia, I have never complained of muscle pain. I get a lot of pain – at its worst it prevented me from sleeping day or night for three weeks – but I have never thought of it as muscle pain. The pain is everywhere, as though I have been poisoned by something and my body is screaming for oxygen, but its not specifically in my muscles. I get terrible muscle and subcutaneous discomfort – to the extent that I feel I want to rip my muscles from my bones – and the way my muscles respond to any sort of exertion feels very wrong and makes the discomfort and pain (along with cognitive function) much worse, but I’ve never called it muscle pain. Does that mean I don’t have ME? I don’t know. That’s why I tend to say that I am diagnosed with ME rather than saying that I have ME.

Some time ago I started writing an essay on this subject but I didn’t manage to finish it. Maybe I will return to it after writing this.

[edit – typo]

 

[Revel]

It may be that the notes were being written by someone who knew if they put down ME or CFS then any other things wouldn't be taken seriously.

@Adrian, the same nurses who took down my medical history at admission were the same ones who made no allowances for my ME symptoms whilst I was in their care (I switched wards, so this occurred twice). Not that I expect "special treatment", just for them not to make my stay any more miserable than it need be. They were constantly encouraging me to sit bolt upright in bed. At one point raising the head of the bed to an unbearable angle and then placing the bed positioning controller out of my reach (I cannot sit upright like this without getting tachycardia and fainting - I tried to explain this, it fell on deaf ears). I couldn't eat for 2 days simply because they refused to 'indulge' my food intolerances and gastroparesis. I wasn't taken seriously, regardless. They weren't doing me any favours by their omission.

Recently, notes were being taken in preparation for a general anaesthetic and the surgeon chose not to include ME/CFS or POTS in his assessment to be forwarded to the anaesthetist. I am due to be admitted for surgery later this month.

 

[Trish]

@Robert 1973 I share your concern. Will I, when the time comes and there's a biomedical test announced, actually show up on it? What if I don't?

And I wonder whether I am atypical too. I have some of the core symptoms, PEM, muscle fatiguability, orthostatic intolerance, poor sleep etc., but I have far less severe cognitive dysfunction than most people describe compared with my physical dysfunction. Does that mean I don't have what other people have?

As to muscle pain - how can we describe exactly what we have? Mine is, as you describe, whole body pain that feels like it goes right through from skin to muscles to gut, but it does also get worse in specific muscles that I overuse, so I describe it as muscle pain. Whether it's the same as you have, who knows?

 

[Revel]

As to muscle pain - how can we describe exactly what we have? Mine is, as you describe,

Me, too. I sometimes describe it to non-pwME as being put through a mangle, or similar to that point when you are having your blood pressure taken and, just before the cuff is released, it becomes horribly uncomfortable, but all over.

 

[Esther12]

I sense I’m in a minority here but I’m not at all attached to the ME label.

I think most patients are aware of all the uncertainty around labelling and diagnostic criteria. We don't have much good evidence to go on at the moment for deciding what is the best way forward, but at the same time we've seen how loose criteria like Oxford can be used unreasonably to make very broad claims about a hugely diverse patient group, so there is a legitimate desire for change. Also, we've seen White talking about how the ME label can make it harder for those at his insurance company to turn down claims.

I think that patient discussions around criteria, ME & CFS labels, etc can give a bit of a misleading impression as those with the firmest views are the most likely to comment, while people who think 'I have no idea, it looks like a complete mess' are less likely to feel they have much to contribute. When there's so much uncertainty, and little strong evidence to form a consensus around, I expect that most of us are in some form of minority on the issues.

 

[Jonathan Edwards]

I sense I’m in a minority here but I’m not at all attached to the ME label. It’s much better than CFS, and I’m happy for it to be used, but equally I am not at all confident that everybody who meets the diagnostic criteria for ME (whichever critera is used) has the same illness. Whilst the CFS label is deeply unhelpful and trivialising, it also concerns me when the ME label is used to imply a higher degree of certainty and understanding about the illness (or group of illnesses) than is true.

I get a strong sense of this being important. In one way the dual term ME/CFS has an advantage, certainly for the research community and perhaps for the patient community, in reminding everyone that naming is a compromise because it is still very unclear what it should .f

I like the concept of of a specific category based around exertion intolerance but I am not very keen on systemic or disease. Maybe ME/SEID would be a way to go - gently.

 

[Sasha]

I like the concept of of a specific category based around exertion intolerance but I am not very keen on systemic or disease. Maybe ME/SEID would be a way to go - gently.

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.

 

[Keela Too]

I agree, the naming is a difficult issue. Like others I found some descriptors didn't seem to fit me - at least not on first impressions. Let's face it I've never been a morning person, so when I was asked about "unrefreshing sleep" - which was true, but actually not any worse than prior to ME. I always woke up needing a couple of cups of coffee to come round in the morning. So in some ways my morning state was not different, so "unrefreshing sleep" seemed a bad description.

Better would have been a longer question: "Do you think a few good nights sleep would make you feel well again?" When I was busy in my job etc. then YES it would, but once I had ME the answer was of course NO, no amount of sleep would make me feel well again. What "unrefreshing sleep" means to a medic and to a lay person might be different.

 

[arewenearlythereyet]

@Robert 1973 I share your concern. Will I, when the time comes and there's a biomedical test announced, actually show up on it? What if I don't?

And I wonder whether I am atypical too. I have some of the core symptoms, PEM, muscle fatiguability, orthostatic intolerance, poor sleep etc., but I have far less severe cognitive dysfunction than most people describe compared with my physical dysfunction. Does that mean I don't have what other people have?

As to muscle pain - how can we describe exactly what we have? Mine is, as you describe, whole body pain that feels like it goes right through from skin to muscles to gut, but it does also get worse in specific muscles that I overuse, so I describe it as muscle pain. Whether it's the same as you have, who knows?

I also agree with Roberts post about the confusing nature of names and symptoms etc.

I think everyone’s pain is different (and perceived differently) and part of the confusion is all these anecdotal experiences using slightly different language to explain the same thing as well as the symptoms being different

I have a CFS diagnosis from an NHS specialist doctor (2014...they don’t give ME diagnosis any more) I have PEM but to listen to some folks I don’t have classic ME because I didn’t have a sudden onset infectious route.

I dislike both names and would be glad when they are ditched ...However It’s very small talk in the scheme of things and is clearly being used by Sharpe and others as a side show that can be stirred up to deflect attention away from the real issues...I guess I got sucked in there too!

 

[Jonathan Edwards]

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

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.

 

[Sasha]

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.

Can you think of a way to express it that isn't ambiguous in terms of it being a patient's choice?

 

[Keela Too]

Can you think of a way to express it that isn't ambiguous in terms of it being a patient's choice?

Systemic Metabolic Insufficiency

 

[Sasha]

Systemic Metabolic Insufficiency

Do we know that that's what it is?