Who Hijacked ME?

cheson's original usage to allow those with apparently similar symptoms of different aetiology to be classified as having ME. They may have, or they may not, but it clouds the issue and prevents accurate research.

 

The suggestion seems to be that criteria that doesn't include emotional lability are examples of ME being 'hijacked'.

 

Note that in the given source https://www.cfids-me.org/ramsay86.htm, "emotional lability" is mentioned as one of the cardinal features of the cerebral dysfunction in ME, not a cardinal feature of ME itself.

In the first edition of Melvin Ramsay's book, 1986, a source for this document*, this doesn't even get such prominency as diagnostic part of ME.
Ramsay is discussing how to make a diagnosis, and in that light discusses the three main features of the illness that in combination make it easier to diagnose ME, what he calls the 'diagnostic triad':

• extreme fatigue/dominant and persistent muscle fatiguability, that is negatively impacted by exercise and has a delayed recovery
• susceptibility to cold/climactic change (which he relates to impaired circulation)
• cerebral dysfunction

Therefore Ramsay advises to examine ME patients after exercise, and do "close interrogation" about the other two points. (Makes sense no? Basically PEM, not being able to handle cold and climactic change well, and cognitive symptoms, and have all three present for a positive diagnosis.)


Emotional liability is named as commonly occuring among a bunch of other things falling under cerebral dysfunction. In a repeat of what according to him constitutes ME further on in the book, he doesn't mention it again.

(Emotional liability is mentioned in the book on multiple occasions, but as part of reporting on what was said about patients in earlier outbreaks in the 30s, 50s and early 60s. It might very well just be a reflection of male physiscans looking at a patient population that was largely female. It's why "hysteria" is mentioned a lot too, which is saying more about medical mysogyny than actual patient observation. )


Between gendered prejudice and patients having the stress of an intense, disabling illness, I'm sure "emotional liability" has been "observed" a lot. But I doubt it should carry much weight beyond showing that chronically ill patients need adequate support for dealing with their illness if it becomes too heavy a burden. (Before BPS takeover it was accepted as normal that about 30% of people with a chronic illness were having a depression as a logical result of them having to live with it.) And if you look at the pieces of text where Ramsay sets out painting a picture of ME, it seems he didn't give it much weight either, beyond that it could occur.


*(I don't have the 1988 second edition)

 

For me it's an overload symptom, only occurs in crowded, and importantly, very echoey places - like bus stations, shopping centers/malls. Other things, like being unable to move (cognitive issue, things/people move faster than I can predict so unable to 'decide' where to step next as the environment changes too rapidly - I can get 'stuck' without help, until things/people become less movey and I can figure out how to proceed rapidly enough to avoid being blocked by moving obstacles) also occur in the same places.

So I 'tend' not to go to such places, I haven't been in a shopping center for many years, I avoid hospitals (echoey, no colour differentiation, etc.).

So in my case it has existed as a symptom, but it is one that i avoid provoking wherever possible.

I'm autistic as well as having ME so that's probably a factor in it as well.

 

The point is that the ME we describe today isn't the same ME that was described in 1955.

 

Lots of different experiences, but I see just as often in LC forums people talking about having essentially disconnected emotions, not feeling anything anymore, not low mood, as in depression, but the absence of an emotional state, just as often as I see the opposite. Personally it's both, usually I'm basically almost in a sensory deprivation state, but when something has to be done and I am facing running out of energy to finish, frustration creeps in quickly. But it's more of the type where my healthy self would have been trying to do an impossibly frustrating task for hours and was starting to run out of time and knowing that if I don't finish it will bite me in the ass, just on a massively accelerated time frame.

Different methods of interpretation, different people making different choices to interpret this, will likely produce whatever biases the researchers have, straight into their conclusions. It really needs to be accepted that without objective instruments, literally all of this is judgment and perception. Not the patients', the professionals'. None of those things have any more meaning than whatever meaning diviners reading animals' entrails were "seeing". They were "seeing" whatever was useful in the transactional process of someone giving them something, money or food, in exchange for their, uh, "divining".

 

I just have that horrible feeling it is 'manufactured' ie they get someone with severe ME and force them on a sleep hygeine and exercise regimen and then refuse to listen when they beg to sit down, eventually you get what would be called exhaustion of the kind no normal person would experience, desperation and exasperation that you are in a dystopian world. And people think it is 'lability' because 'normal people don't get that emotional from not being able to sit when they want'.

Sorry but I read anything like this that doesn't have lived experience input but is assessed objectively by a professional who could just be being 'best-fit' on their description terms, or excluding context, with a pinch of salt. If you didn't know what PEM was and understand therefore what situation someone was in then yes an outsider might say 'ability' when it was really 'over-exertion/being in a crash and being exerted' or all sorts of other more relevant descriptions. Like squeezing someone with arthritis' hand causes pain and it's worth mentioning the context.

 

I found the recognition of emotional lability as an aspect of ME CFS helpful. I also found interpreting my experiences using knowledge we have about stress useful too. I have found emotional lability and shellshock-like levels of stress to be very significant aspects of my condition.

I cannot say why I experienced the things the way I did and still do, how much is normal stress and how much is exacerbation due to illness affecting the nervous system. All I can say is my cognition changed dramatically and this ramified in unexpected ways creating a vicious cycle of dysfunction, stress and fugue like psychosis when undiagnosed because the affects of the condition were so profound.

Identifying emotional lability as a thing and knowing about it from experience and knowing that other people experience something like it made it much easier to manage constructively and prevent the vicious cycle and undo the damage of a decade trying to struggle against it when I should have been pacing.

Pavlov (whose morality I would not emulate but refer to as he is regarded as a credible authority in empirical psychology) did note that physical stress can cause psychological lability in otherwise healthy dogs, making them easier to condition. I cannot say whether my experiences are due to stress of this kind induced by physiological dysfunction of the bowel, (which was one method he used to increase the impact of stress), or by direct inflammation of nervous tissues causing neurological hypersensitivity which is recognised as occurring in relation to injury of nerve tissues and which I believe is observed in ME as hypersensitivity to stimuli, like light and sound.

Regarding the latter it seems some people are more profoundly affected than others and I would encourage those not as badly affected to recognise this and not simply extrapolate from their normality when considering the experiences of the more severely affected.

I can say that an awareness of the issue has helped management.

My own experience has been that I have endless back to back cycles of immune activity in relation to documented provably recurring viruses and at some point in the cycle I notice everything looks extraordinarily colourful and beautiful, at such times I find myself more emotionally labile than usual and this includes euphoria and irritability. This is sometimes compounded by phenomena like rigors which indicate hypothalamic dysfunction and this is why I believe that in my case there is an inflammatory process occurring in my nervous tissues having a direct affect on my cognition and causing emotional lability on top of the other stressors.

I have described this as a triple whammy i.e. disturbance to normal life causes stress, disturbance to bowel and musculature amplifies it and disturbance of the nervous system amplifies it further, creating a very difficult situation for me. I am glad to read that not everyone is as badly affected but would just ask everyone to bear in mind that some people are.

Whether this is due to degree of severity or subtype I cannot say, I just keep hoping that someone will work it out one day. Of course the fear for me is they wont work it out if they dont believe it exists, which is something we can all relate to I feel sure!

 

Or maybe the ME is the same, it's just the description has been improved over time. To be honest, without having a definitive test for ME, and being able to test people diagnosed in the 50s and compare them with people diagnosed today, it's an argument that can't be definitively 'won' one way or the other.

 

The case definitions and subsequent research always has some degree of circularity involved. What is chosen to include and exclude in the diagnosis changes the patient cohort and hence the effect sizes in research.

In general, there has been an absence of high quality qualitative research - most research, including the design of clinical guidelines is guided by the prejudices or intuition of researchers/practitioners, rather than being primarily patient driven.

I don't (or no longer) believe that ME/CFS is a single disease. But the post-activity fatigue aspect is a common outcome from multiple possible downstream causes.

I also no longer believe that PEM is specific to ME/CFS (as controversial as this is). As the very least, PEM is also associated with the CFS like syndrome post-Guillain Barre Syndrome, or post-Polio syndrome. Similarly, patients with other certain other chronic autoimmune diseases describe post-activity "flares" of their symptoms. The main difference is those diseases are blamed on the diagnosed pathology (regardless of the lack of evidence of scientific mechanisms) and hence few people look any deeper.

 

Which autoimmune diseases do you mean? (I have lupus and PEM or post-activity flares has never been blamed on lupus or any autoimmune illness, the doctor was always clear that those types of symptoms could not be attributed to lupus).

 

The person in my group who turned out to have myasthenia gravis is convinced that she has PEM. I remember reading it in the IOM report that a lot of people with multiple sclerosis reported they had PEM. I don't know if these are really the same though or similar-sounding but different effects and PEM is just not well-defined at this point, so people with certain other diseases subjectively feel they have the same thing.

 

I also doubt that PEM defined as pattern of symptoms worsening with a delay after exertion is unique. But it could be a situation where there are different kinds of PEM that are not being distinguished due to lack of research.

What is seen in the 2-day CPET may be much more specific, and there was a study that found multiple sclerosis patients did not exhibit the same response as ME/CFs patients. But if you described PEM to patients with MS I suspect many would say they have it.

I don't think PEM of either kind is a very common problem because it's hard to reconcile that with the general ignorance in medicine about it.

 

Some of it sounds like autism, but I get it as a cognitive dysfunction too. At times I just can't think. They kept trying to say it was agoraphobia but it was nothing like that. I would step into a supermarket stand all confused for a few minutes and then leave. Or wander about the town trying to work out how to get home. Then they call it brain fog and trivialise it to forgetting what you went into a room to get!

 

I don't think other diseases get PEM the way we do mainly because I have spoken to people with other illnesses and they do not describe what I get.

It may be that we all get PEM in that most of us get symptom exacerbation if we do too much but the other thigns are different. Being able to lift a big bag of potatoes once but become exhausted by lifting a spoon 5 times is not usual, neither is feeling fine then collapsing after 3 days and having to spend a week in bed recovering. People with other diseases get their exacerbation the same day the do too much and it usually resolves fairly quickly with rest.

 

Emotional lability is different from us being depressed or anxious. It happens on too small a scale to be picked up in trials or even doctor consultations unless we are asked.

I know that I am in PEM when I suddenly get deeply depressed and anxious. A short nap can often fix it and it rarely lasts until the next day. It is annoying because it has no relationship to what is happening in my life.

ME has widened from Ramsay's time, but Royal Free Disease still exists under the umbrella. In 1984 many of the victims were active in the ME community (as was Dr Ramsay and other medics) they had the same disease I have and I share many of the symptoms with people on this forum especially the strange ones that are never mentioned like Wonko's above.

There has been a continuity. The only thing I have that is different is I have never fit any of the definitions of CFS.