Is myalgic encephalomyelitis/encephalopathy an inappropriate name?

[leokitten]

No, it's not a matter of severity. In short, there's more to ME than fatigue. Or a headache. Or a sore throat. Or all the other common symptoms in the CDC criteria. A good scientist nitpicks, to be accurate. Fatigue is subjective. That is perhaps why Powell et al managed to reduce fatigue after CBT lasting three hours. Lots of people suffer form fatigue, headaches, sleep disturbances and sore throats. As you get older, the memory goes, especially if you're also menopausal. So as researchers have already pointed out, you need to get away from the CDC criteria, ergo, the alternatives. The latest are all tending towards the old concept of ME.

Is CFS the same as ME/CFS or ME? Well, ME can occur in epidemics (name me an epidemic of CFS - bit difficult when you can't diagnose it for six months), and is closely linked to enteroviruses. It is also associated with Summer bugs. Can you say the same about CFS, or ME/CFS? At the moment, following the evidence, they are different. They overlap, but are different and that is what Ramsay thought too. And a lot of other doctors.

ME is an acute illness, though has a tendency to become chronic as Ramsay discovered around 1978. (That is his claim to fame. He didn't think up the name but he was the one who showed it tended to be chronic). There are mild forms. People can work, and do. In my studies, I had a few who worked fulltime. It depends on the symptoms and if you can compensate for them. But, as you should know, fatigue is NOT the core symptom of ME. It's less common than CFS (1 per 1000). I've summarised it all in the criteria paper. They are different unless you're a CBT fan who will tell you, they are not. They lump. It's all stress and fatigue.

If you don't define your research sample well, you can introduce confounders and make the results impossible to interpret. Another example, GET works well if you take the course at Barts, but it's not as effective in the USA. Different concept of CFS and ME. In the US, CFS is closer to ME than in the UK. But research HAS to exclude people with chronic stress or you get results like Heim et al etc.

Ellen I agree with a lot of what you've said, though for example i have a couple concerns, from your criteria:

All patients should fulfil the following five criteria:

1. A new onset of significantly abnormal levels of muscle fatiguability and/or muscle weakness, precipitated by relatively minor levels of activity. Symptoms typically worsen during the next 24-48 hours.

This particular criteria I don't think everyone with ME has. Like myself, a person who works full-time with ME, how can I, i.e. get up every morning and get ready, drive or take public transport to work, walk to office and then work all day walking and moving around, walk back and drive or take public transport home, get home and eat etc, and do it all over day after day while meeting this criteria?

I don't feel I have this muscle fatiguability, at least to the level that you describe it, but I have basically every other symptom of ME from your document as well as the ICC and CCC criteria.

The way you write the criteria rules out people with milder forms of ME.

 

[EllenGB]

The ME criteria come from people like Drs Ramsay, Dowsett and Parish, based on experience from 1955 to the 1990s. Dr Shepherd and myself just translated Dr Ramsay's description into criteria form. There's nothing new. You would not be diagnosed with ME by Dr Ramsay as he specifically noted that this characteristic HAD to be there. So you have CFS. I trust that isn't a problem.

There are no other criteria for classic ME, i.e. the ME described before CFS when the emphasis moved towards fatigue. The hybrids allude to the delay in recovery after minimal exertion, e.g. PEM. So does SEID, if I recall.

Sadly, Drs Ramsay and Dowsett are no longer with us to debate this. I can't add anything.

 

[leokitten]

The ME criteria come from people like Drs Ramsay, Dowsett and Parish, based on experience from 1955 to the 1990s. Dr Shepherd and myself just translated Dr Ramsay's description into criteria form. There's nothing new. You would not be diagnosed with ME by Dr Ramsay as he specifically noted that this characteristic HAD to be there. So you have CFS. I trust that isn't a problem.

There are no other criteria for classic ME, i.e. the ME described before CFS when the emphasis moved towards fatigue. The hybrids allude to the delay in recovery after minimal exertion, e.g. PEM. So does SEID, if I recall.

Sadly, Drs Ramsay and Dowsett are no longer with us to debate this. I can't add anything.

But then for all practical purposes they are the exact same disease, sorry but that's true.

It's ridiculous that one can have pretty much every symptom category in the ICC, CCC, and in your document except this very narrow definition of muscle fatiguability and then bam, suddenly now they have a different disease.

You can't give some people with the same disease one diagnosis and others with the exact same underlying disease a different diagnosis.

 

[lansbergen]

You can't give some people with the same disease a particular diagnosis and others with the exact same underlying disease a different diagnosis.

Which disease?

 

[leokitten]

Which disease?

Since we don't have any real understanding of the pathology or etiology of ME/CFS/SEID and no distinct biomarkers than it's whatever disease that we all have based on these symptoms.

If someone doesn't meet the above written narrow criteria for muscle fatiguability but meets every other criteria for ME written in that document as well as in ICC and CCC does that mean they have a different disease? Ramsay surely thought so, and I'm sorry it's totally wrong.

 

[EllenGB]

Everyone is entitled to their opinion. In the UK, we have a great respect for Drs Ramsay, Dowsett and Parish. History will tell who is right and who is wrong.

NB Dr Ramsay noted, in his book and articles, that he did not believe that ME was the same as CFS. Fact. Moreover, criterion 1 can be measured objectively (Paul et al 1999). One can also measure other variables to ascertain that they worsen after 24 hours and some have done so.

I'm a scientist and have to follow good evidence. I'll just wait for the best designed studies and see what they come up with. If anyone reads Prof. Jason's articles, he basically says the same as I do: that we have a real problem with the results because of the different diagnostic categories and the variance in inclusion and exclusion criteria. He did the maths. He's just found the criteria for SEID to be deeply flawed. There's a lot we don't know, except that the different criteria select differing groups, ergo, few findings are replicated.

Perhaps a good time for me to cease this discussion. After all, the thread is about encephalopathy, a change made to avoid losing ME altogether. That succeeded. No one really refers to encephalopathy anymore but if any doctor says that there is no evidence of 'myelitis', one can reply that a new name was proposed in recognition. Then doctors ceased to care about the exact name. In my paper, I still refer to ..myelitis and no one questioned that. There was a problem, it was dealt with and now that problem has gone away.

The issue now is not the name but diagnostic precision. Research will compare and contrast the different samples diagnosed using the latest criteria on a number of variables to see if they differ. that is how we might get our answers.

Good night!

 

[Scarecrow]

name me an epidemic of CFS

The term CFS came about because of the outbreak of disease in Incline Village.

 

[duncan]

I wonder how often ME is acute, and what it is diagnosed as in the US when it is acute.

 

[lansbergen]

Since we don't have any real understanding of the pathology or etiology of ME/CFS/SEID and no distinct biomarkers than it's whatever disease that we all have based on these symptoms.

If someone doesn't meet the above written narrow criteria for muscle fatiguability but meets every other criteria for ME written in that document as well as in ICC and CCC does that mean they have a different disease? Ramsay surely thought so, and I'm sorry it's totally wrong.

I still have muscle fatiguability and many other symptoms disappeared.

 

[Sidereal]

Ramsay's muscle fatiguability/weakness case definition describes my illness better than any other including ICC, CCC and IOM. Many other symptoms have come and gone over the years but the core problem of muscle fatiguability and postexertional exacerbation of symptoms remain.

 

[EllenGB]

I wonder how often ME is acute, and what it is diagnosed as in the US when it is acute?

Ok, one last post as you asked a question politely. ME: Epidemic cases: always acute, obviously. Overall, the figure is about 80% of endemic cases. Gradual onset is known and not all cases follow a clear infection. They creep up on people. From the lit. Didn't make it up. Just passing on info, as I used to be an archivist. In the US, they don't diagnose classic ME so it's CFS and I havn't seen much on acute forms. no research certainly. Dare I say, they have an infection (IM?) and hope you get better. If you don't, then they consider CFS. But haven't got the lit to give a clear answer.

The advantage of ME is that you can make the diagnosis quickly, especially during an epidemic. The criteria are for research and hence, there's a a time to get over more normal post-viral syndromes. It can take a few weeks to get over flu.

Back to the Tour de France.

 

[duncan]

Not Wimbledon?? Murray is playing!!

80% acute. They do bloodwork and it shows...what? How do they define ME even in the UK in acute cases?

I apologize if this is in Ramsey's writings or WHO stuff. I am just a yankee busy celebrating...Oh dear, never mind.

 

[charles shepherd]

Isn't it a CFS Biobank? No one has ever allowed me to participate. Anyway, if stress has been excluded, then it's time to do a MRI. I'm surprised how few are done. If you read Poser's articles, sadly, I misplaced one, he identifies similarities and differences, so you can see abnormalities in ME and PVFS. Stress can explain raised cytokines but it can't explain some of the MRI results e.g Daugherty, Schwartz et al. I'm very keen on MRI and repeat SPECT. Tirelli et al replicated Costa et al. I think they were on to something. And activity might explain raised cytokines too, come to think of it (despite Lloyd et al's odd results). So you need a test-retest design for that, and then you can interpret the data with more confidence. Don't tell me, my memory has failed me and that's exactly what Lipkin and Hornig did.

I'm getting old.

Ellen

Hi Ellen

People who volunteer to provide blood samples for the ME Biobank have to jump two main hurdles

Firstly, they have to meet Fukuda and/or Canadian Criteria for CFS

But because we have a large amount of clinical data on each person we could also sub-group into other diagnostic criteria if required

Secondly, they have a far more detailed clinical assessment than would normally occur in a clinic - so anyone with another explanation for their symptoms is excluded from donating blood to the ME Biobank

 

[halcyon]

I'm a scientist and have to follow good evidence. I'll just wait for the best designed studies and see what they come up with. If anyone reads Prof. Jason's articles, he basically says the same as I do: that we have a real problem with the results because of the different diagnostic categories and the variance in inclusion and exclusion criteria. He did the maths. He's just found the criteria for SEID to be deeply flawed. There's a lot we don't know, except that the different criteria select differing groups, ergo, few findings are replicated.

I really wish more people were working on this besides Jason (and Twisk apparently?). This is a hugely important for all research using these case definitions. Not just for comparing findings between studies, but for making sure we have the right patients in the first place. As the IOM report noted, from Jason, without using thresholds for assessing symptoms, 33.7% of healthy controls fulfilled Fukuda criteria, 20.7% fulfilled CCC, and 14.6% fulfilled ME-ICC. Jason shows that the CFS vs. ME criteria select different patient groups with different symptoms and a different severity of illness. We can't keep pretending ME and CFS are the same thing. The IOM and even NICE acknowledge the difference, but then go on to treat them the same just because.