Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

I guess you have to start somewhere with unpicking the whole mess. I have to say ME people are the most abnormal, normal people.

I do wonder how we would have found diabetes if Oskar Minkowski and Joseph Von Mering had not witnesses what happened to that poor dog? Would we have found out about the pancreas and then insulin if that had not happened?

 

suggest you have a look at some of the polls/surveys done on this forum and elsewhere.
eg
https://www.s4me.info/threads/symptom-survey-for-those-with-me-cfs.3720/

 

I previously thought that the postinfectious syndromes following bacterial infections might be different. However, reading descriptions of those who had Giardia l., they sound very ME-like to me , e.g. as discussed in this paper

 

If something is going to be a mandatory test, I hope the test is good especially at an individual level. Average differences don't necessarily mean that there are thresholds that have good sensitivity and specificity.

For example, it is not argued that men on average are taller than women. But there are not necessarily good thresholds that can be chosen to say that above a certain threshold somebody is male and below it they are female.

 

This is a continuation of the last post with more information on the citations:

The full text for this is available at: https://sci-hub.tw/https://doi.org/10.1016/j.clinph.2004.05.012

The full text is available for free here:
http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.858.3532&rep=rep1&type=pdf

I have attached the full text:

The full text is available for free here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1737090/pdf/v069p00302.pdf

The full text is available for free here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5200854/

Free full text:
https://bmcsportsscimedrehabil.biomedcentral.com/articles/10.1186/2052-1847-6-10

 

These are the results from a 2014 study. Admittedly, only the Fukuda criteria were used. But I tend to believe that by the time one looks at research cohorts which weren't chosen from random digit studies, most of the patients probably have ME. So based on this, I would be cautious about making delayed recovery a mandatory feature.
A proviso is that this was a same-day study rather than a next-day study.






http://www.meresearch.org.uk/our-research/completed-studies/upper-limb-muscle-function/

 

My son had post viral fatigue. Our GP now thinks it was CFS/ ME.After 6 months he was very ill. Severe migraines prompted lumbar puncture as it was thought it was a potential brain bleed. Yet he never had PEM.

 

So we have cause and effect, but that is normal and although you get bursts of abnormal tenderness with a virus say (mine always flairs up when I get a cold sore) you get to know the difference? You get someone who is constantly looking at these areas you get two outcomes. They get blase and and expect discomfort so just accept it no matter if it has changed and move on, or they get to know when something is wrong. I would say you and Dr Ramsay are/were the latter?

Me with Angus for instance, I would not have a clue, when he complains of stiffness or soreness and his very often in a low sate of cognition at this point that he would not be able to tell me if it was in his shoulder or ankle. I know this sounds funny but we are talking about a poor lad that opens the fridge and asks me the question "What is my name". He had a glass in his hand at the time and wanted to fill it up with water on the outside of the fridge door. We would not be able to tell a Dr the facts they would need to know to find a problem and so these problems are missing. This soreness and stiffness comes on around 3rd to 4th day of recovery after an activity, so it is not part of muscle being used. I don't think Dr Ramsay would just mention this tenderness without having a very good reason to do so? Not that I knew the man, but he is on my dinner party list along with you and few others.

There is something more here? I have been wondering about this since the time of the fridge incident when I first noticed he walked on tip toes and couldn't hold the glass filled with water. He also blacked out going up the stairs.

This is the other thing I noticed early on - he gets cold on the outside of his calf muscles and just below the elbow about four days in from recovery from an activity. I give him body temp salt baths and just warm those areas up and the pain eases. This really is the most bizarre condition.

I have been summoned to the school next Friday where I will be questioned about my son's illness and his inability to get to school for the meeting. The Safeguarding officer of the school won't come to my house and has never met my son. The paediatric thinks the POTS symptoms (even though he has a diagnosis of POTS by that Drs team) are all down to Anxiety. There is no science they would accept on my side to say any different?

It is a strange world we live in.

 

I think that is a common error: To think that when there is no" biological" explanation, then there is only a psychological explanation left - or vice versa: A psychological explanation could be disproven by a biological one (like POTS). In my view an anxiety diagnose has to be made based on clear criteria and not on some symptoms which superficially seem similar to anxiety symptoms.

As a matter of fact, the cognitive symptoms we have are the field of expertise of neuropsychiatry or neuropsychology. Thus, in this sense we might have "psychiatric" symptoms, but these I think can be differentiated from anxiety symptoms or other mental illnesses without the need of an alternative proof of a biological cause. (I think we really could benefit from good neuropsychiatrists/ neuropsychologists with regard to be taken serious.)

[Edited to add: The "science" that could support you imo is e.g. that when your son's symptoms have the pattern of ME and he has an ME diagnosis, he does not need an additional POTS diagnosis; it is possible to have ME and an anxiety comorbidity but I think it is also possible to differentiate anxiety from ME related symptoms; there is no evidence that any psychological treatment is effective for ME.]

Best wishes for you and your son, @Tilly ! I hope you will find support.

 

It certainly is and I appreciate the impossibility of your situation.

However, I would query whether one should take too much notice of what Melvin Ramsay said. When I look this account I get the impression that he was not a very rigorous observer. He is popular because his name is associated with the term ME but it was not in fact him that invented the term and the term was really invented to describe an illness that is not the illness that we call ME today. It was a pathological concept with implication of a virus that turned out not to have any identifiable pathology. Everything has become muddled and the more I learn about ME the more I think we should forget what was said fifty years ago and focus on people's problems now. Maybe it is better to think in terms of chronic fatigue syndrome, but I appreciate that the focus on fatigue is not ideal.

 

Och NO. NO. NO

That name must go.

 

Fluff I had incorrectly given Melvin Ramsay hero status. Thank you for the history of the name now that makes sense why so many get hung up with the name.

It is more than muddled. Wish we could start again. I know when I was at the NICE meeting this was a sticking point and we decided to move on quickly.

Fatigue is only a bad term due to the way it has been used in some quarters? Though I don't like the term as this is not what I witness or explains what the people experience of those I talk to. America had a good go at changing the name but the less said about that the better.

How about Chronic Post Exertional Malaise? CPEM, Less said about that the better too? I explain it to Angus as Post Activity Increase in New or Severity of Symptoms PAINSS for short and he said it was a pain in more ways than one.

I agree we should focus and get serious about what happens to the people now. The focus should be and always have been an inability to do any activity with feet on the floor standing time for three consecutive days. If this was acknowledge and we started looking at this in detail over a five day period after each activity that produces symptoms - what ever they were, we would no doubt be a lot further forward. Well I can dream.

It does not matter what we call it, it matters how we perceive the condition.

 

Dr Ramsay was popular because he interacted with patients with respect and consideration. If we had had forums then he would have been here answering questions and trying to help. He had no agenda beyond helping people. He fought for us till he died.

Chronic Fatigue Syndrome was a name given to a disease to make it disappear. I think SW was explicit about making ME disappear and the patients with it and let's face it he succeeded.

CFS not only trivialised what was happening - everyone feels fatigue but only wimps and freeloaders give in to it. It makes everyone who struggles out of bed on a Monday morning resent us. We go to a GP who is overworked and struggling and how much sympathy will they have for someone complaining about chronic fatigue?

It also gives a beautiful opportunity to conflate chronic fatigue, tired all the time, fatigue as experienced in other disease (but of course they don't give into it; at one point it was described as fatigue but not the real dreadful kind that people with MS get)

It also opens up CFS research money to researchers looking at their disease interests. Everyone wins except us.

Finally it made fatigue the focus instead of the strange energy problems we have. It misses the things that make us disabled and concentrates on a side issue. Like MS concentrating on fatigue instead of not being able to walk or move. The BPSers could move in on CFS where it was harder with ME.

Call it SEID if ME seems too inaccurate but never CFS, that is letting ourselves down, it is a term of oppression used against us.

 

Actually I think that one isn't so bad. Not sure why many activists are so opposed to it.