What is ME ?

[EYAKLLE]

M.E. is quite simply the inability to sustain consecutive activities comfortably. Nothing complex or multi about about.

Long periods of peaceful rest are needed. Simply speaking.

Fatigue is really the last symptom on the patient's mind. Rather, there is a physiological state persisting as if the patient was constantly being forced into rest as if the body were always at the end of a physical performance. Rest can really help but any recovery is shortlived and minor. The whole body is in dire straits but the patient is too out to be bothered about it.

Just like someone recovering from a general anaesthetic who stays locked in that period post op where the whole body and its parts are struggling. The recovery never comes making things quite a hurtful toil. Pushing and forcing is ultimately emptying for whole body and its mind.

That is M.E. Symptom wise easy to grasp. Clinically easy to diagnose if an astute physician.

It was turned into a spectrum disorder catastrophically. Initially as an error maybe. But then on deliberately.

As if to say that all gay people without hiv but with other serious diseases have spectrum aids disorder syndrome just for group compassion. They wouldn't want any compassion anyway as they are all man and woman enough. Just like ME patients try to stay strong.

Those misdiagnosed with ME who dont have it, or with CFS/ME as opposed to those who really have ME have been served up a massive injustice. They need help too. But a different kind of help, and urgently too. They need to be re-orientated for nutrition support, mould support, immune imbalance support, endocrine support most true ME patients have normal test results for normal tests.)For their real and serious physiological imperfections, viral and/or other. Not classical diseases but persisting medical symptoms. Those spectrums are NOT ME but definitely nasty in their own right.

A lot of people have been conned into believing they have something they plain and simply do not have.

 

[Paw]

M.E. is quite simply the inability to sustain consecutive activities comfortably. Nothing complex or multi about about.

Long periods of peaceful rest are needed. Simply speaking.

Fatigue is really the last symptom on the patient's mind. Rather, there is a physiological state persisting as if the patient was constantly being forced into rest as if the body were always at the end of a physical performance. Rest can really help but any recovery is shortlived and minor. The whole body is in dire straits but the patient is too out to be bothered about it.

Just like someone recovering from a general anaesthetic who stays locked in that period post op where the whole body and its parts are struggling. The recovery never comes making things quite a hurtful toil. Pushing and forcing is ultimately emptying for whole body and its mind.

That is M.E. Symptom wise easy to grasp. Clinically easy to diagnose if an astute physician.

It was turned into a spectrum disorder catastrophically. Initially as an error maybe. But then on deliberately.

As if to say that all gay people without hiv but with other serious diseases have spectrum aids disorder syndrome just for group compassion. They wouldn't want any compassion anyway as they are all man and woman enough. Just like ME patients try to stay strong.

Those misdiagnosed with ME who dont have it, or with CFS/ME as opposed to those who really have ME have been served up a massive injustice. They need help too. But a different kind of help, and urgently too. They need to be re-orientated for nutrition support, mould support, immune imbalance support, endocrine support most true ME patients have normal test results for normal tests.)For their real and serious physiological imperfections, viral and/or other. Not classical diseases but persisting medical symptoms. Those spectrums are NOT ME but definitely nasty in their own right.

A lot of people have been conned into believing they have something they plain and simply do not have.

Sorry, I'm having trouble following, Eyaklle. While your initial description of ME sounds broadly like a syndrome, you then take pains to differentiate "true" ME from a wider spectrum. Am I missing something? Maybe you could elaborate on what an "astute physician" would find when s/he makes an "easy" ME diagnosis, as opposed to a spectrum diagnosis.

Not trying to argue, just trying to understand your point.

 

[weyland]

A lot of people have been conned into believing they have something they plain and simply do not have.

I'm not sure conned is the right word. Many people are given this diagnosis by well meaning but ignorant doctors. It's not necessarily their fault either though as they were not taught about it in medical school and the available continuing medical education does not provide any useful information. I do blame the doctors that use the label to dump difficult patients that they don't want to spend their time on though. Once the CFS label is applied the workup stops. This is dangerous because as some studies have shown, the misdiagnosis rate is alarmingly high. Close to 50% in one British study. How tragic to have something potentially treatable but be told you have CFS and there is nothing to be done. This isn't just a hypothetical, I have seen this happen.

 

[weyland]

While your initial description of ME sounds broadly like a syndrome, you then take pains to differentiate "true" ME from a wider spectrum. Am I missing something? Maybe you could elaborate on what an "astute physician" would find when s/he makes an "easy" ME diagnosis, as opposed to a spectrum diagnosis.

ME was defined by observation of patients between 1955 and the mid 1980s. It has a very stereotypical pattern of onset and symptoms. It's something that doctors could recognize acutely if they were trained to do so. CFS is by definition not an acute illness, since you have to wait 6 months in order to be diagnosed with it, there is no requirement for acute onset. CFS appears to be the spectrum diagnosis, while ME applies to a smaller number of patients inside that spectrum.

 

[Cort]

M.E. is quite simply the inability to sustain consecutive activities comfortably. Nothing complex or multi about about.

Long periods of peaceful rest are needed. Simply speaking.

Fatigue is really the last symptom on the patient's mind. Rather, there is a physiological state persisting as if the patient was constantly being forced into rest as if the body were always at the end of a physical performance. Rest can really help but any recovery is shortlived and minor. The whole body is in dire straits but the patient is too out to be bothered about it.

Just like someone recovering from a general anaesthetic who stays locked in that period post op where the whole body and its parts are struggling. The recovery never comes making things quite a hurtful toil. Pushing and forcing is ultimately emptying for whole body and its mind.

That is M.E. Symptom wise easy to grasp. Clinically easy to diagnose if an astute physician.

It was turned into a spectrum disorder catastrophically. Initially as an error maybe. But then on deliberately.

As if to say that all gay people without hiv but with other serious diseases have spectrum aids disorder syndrome just for group compassion. They wouldn't want any compassion anyway as they are all man and woman enough. Just like ME patients try to stay strong.

Those misdiagnosed with ME who dont have it, or with CFS/ME as opposed to those who really have ME have been served up a massive injustice. They need help too. But a different kind of help, and urgently too. They need to be re-orientated for nutrition support, mould support, immune imbalance support, endocrine support most true ME patients have normal test results for normal tests.)For their real and serious physiological imperfections, viral and/or other. Not classical diseases but persisting medical symptoms. Those spectrums are NOT ME but definitely nasty in their own right.

A lot of people have been conned into believing they have something they plain and simply do not have.

Here's a question: if a person with ME keeps pushing it what is their experience. I would suggest its one of pain and fatigue and probably orthostatic intolerance. I would think that fatigue - mental and physical exhaustion - would be one of the first things on their minds. Severe fatigue is consistently mentioned by the way in all the early accounts of ME. In fact the physicians of the time noticed that however the disease started - there were sometimes weird neurological symptoms such as temporary paralysis - that most of the neurological problems vanished over time to be replaced by a severe fatigue and weakness.

 

[Tony L]

To say that ME is quite simply...... is simply not a valid statement. Sufferers given a diagnosis of ME/CFS/FM have complex systemic disease. How these conditions are related is not clear. What is true is that for each the condition is variable in the outcome and there is overlap of symptoms.

To suggest that diagnosis of ME is easy is I think not the case, otherwise that would be happening. So why is it not happening? Well I can only speak for the UK where virtually all diagnosis will depend upon a GP/clinicians personal opinion in the absence of a medical model for the pathology of our disease(s). Most will have no training and many will have been swayed by the psychiatric bias of the NICE guidelines.

In these circumstances it is a lottery as to whether an appropriate diagnosis is given and to what extent it differentiates between ME/CFS/FM. So it was possible for me to sit down with a clinician who listened to my story, showed no interest in it, told me he did not like the idea of ME and referred me to a dietician, ten years after my GP had given a diagnosis of ME. I'm not going to defend arrogant and callous clinicians like the one I encountered but I think there are plenty of good people who are struggling because their superiors have failed to give them the tools to do the job.

I found a 2003 statement (one year before my GP diagnosis) from our Welsh Assembly government earlier. It questions why the Medical research council was (then) refusing to fund research into the physical basis for ME/CFS and even questions how health policy could be developed in these circumstances.

That is why 11 years later I experienced a truly appalling consultation. By the way, I did see the dietician who was happy with my diet and defended the clinician on the basis that she thought he was such a nice man!

That is also why in 2016, 13 years after questioning the policy of the MRC our Welsh assembly gov is implementing NICE guidelines as NHS Wales health policy.

I certainly don't identify with your simple description of ME and the idea of fatigue helped by rest. My experience has been a slow progressive disease, Maybe 10 years ago I would have said something like fatigue was my major problem but now I have a complex constantly changing set of symptoms from brain fog/stinging feet and hands/sensory problems/working memory shot most days/some stiffness of joints at times/and more.

 

[Cort]

To say that ME is quite simply...... is simply not a valid statement. Sufferers given a diagnosis of ME/CFS/FM have complex systemic disease. How these conditions are related is not clear. What is true is that for each the condition is variable in the outcome and there is overlap of symptoms.

To suggest that diagnosis of ME is easy is I think not the case, otherwise that would be happening. So why is it not happening? Well I can only speak for the UK where virtually all diagnosis will depend upon a GP/clinicians personal opinion in the absence of a medical model for the pathology of our disease(s). Most will have no training and many will have been swayed by the psychiatric bias of the NICE guidelines.

In these circumstances it is a lottery as to whether an appropriate diagnosis is given and to what extent it differentiates between ME/CFS/FM. So it was possible for me to sit down with a clinician who listened to my story, showed no interest in it, told me he did not like the idea of ME and referred me to a dietician, ten years after my GP had given a diagnosis of ME. I'm not going to defend arrogant and callous clinicians like the one I encountered but I think there are plenty of good people who are struggling because their superiors have failed to give them the tools to do the job.

I found a 2003 statement (one year before my GP diagnosis) from our Welsh Assembly government earlier. It questions why the Medical research council was (then) refusing to fund research into the physical basis for ME/CFS and even questions how health policy could be developed in these circumstances.

That is why 11 years later I experienced a truly appalling consultation. By the way, I did see the dietician who was happy with my diet and defended the clinician on the basis that she thought he was such a nice man!

That is also why in 2016, 13 years after questioning the policy of the MRC our Welsh assembly gov is implementing NICE guidelines as NHS Wales health policy.

I certainly don't identify with your simple description of ME and the idea of fatigue helped by rest. My experience has been a slow progressive disease, Maybe 10 years ago I would have said something like fatigue was my major problem but now I have a complex constantly changing set of symptoms from brain fog/stinging feet and hands/sensory problems/working memory shot most days/some stiffness of joints at times/and more.

How fatigue progresses to other issues and other disorders such as migraine, IBS, FM etc. is a great issue to address.

 

[weyland]

Severe fatigue is consistently mentioned by the way in all the early accounts of ME.

This is why fatigue is a bad word to use. Were they talking about the subjective mental experience of fatigue, or where they talking about muscle fatigue. My guess is mostly the latter because Ramsay's big emphasis was on muscle weakness, it was his hallmark symptom of the disease.

 

[Miq]

@EYAKLLE PEM is not quite simply defined. It is a distinctive feature of this illness though.

 

[Strike me lucky]

The simplest way to describe it is the flu that doesnt go away. So theres more than just fatigue in the flu but a feeling of being sick with headaches, muscle pains. And the illness can progress with worsening of symptoms and more symptoms. Having good, bad and terrible days alternate often for no known reason sometimes. Other times increased effort can make symptoms worse and they can be delayed for upto a day or two.

Fatigue doesnt really describe cfsme.

 

[Miq]

@Strike me lucky I would also say that symptoms change over time. Feeling flu like at the beginning was not my experience, but many years later it seems to have evolved into just that- constantly.

My illness experience is quite different now, including my immune profile.

 

[Strike me lucky]

@Strike me lucky I would also say that symptoms change over time. Feeling flu like at the beginning was not my experience, but many years later it seems to have evolved into just that- constantly.

My illness experience is quite different now, including my immune profile.

Its a progressive illness which drs never mention. I have heard a few drs say that things improve over time. Recently i have been looking around for other drs, one sounded ok until i read where he said cfs eventually burns itself out. I cant say i have heard a patient say that.

 

[EYAKLLE]

Astute dr s can recognize the difference just from the basic symptom. Lack of recup from activity. The definition of activity is pushing which catastrophically n effortlessly short circuits the body n rest is your only friend.
I got a lot better on viread/raltegravir for real ME.
ME patients dont have many complaints. They re too ill and out for the count to complain about anything.

 

[Miq]

@EYAKLLE I'm not sure what you mean by basic symptoms. My basic initial symptoms were viral. I had what appeared to be PVFS, my immune profile at the time wasn't that significant. It took a few years for other symptoms (PEM) to develop because I kept pushing myself when I felt better.

The M.E doctor who diagnosed me based it on, onset, history, relapse and his knowledge of the illness and seeing many M.E. patients over 20+ year

Anyways, I'm glad that you got a lot better from the meds. I have a friend who took viread and raltegravir (not at the same time) and feels that raltegravir prevents him from becoming worse. He continues to take it.

 

[Paw]

Interesting thread. But it doesn't do much to make understanding ME/CFS more easy, or diagnosing it more simple, does it?

I've never been diagnosed with either (I hadn't realized ME and CFS were necessarily different), but I certainly fit all the broadly agreed-upon criteria. Flu is the best metaphor for my experience too, although there are certainly worse times and better times (and, Eyaklle, it's during those better times that I do my complaining and/or analyzing).

I'm not sure why I would want to seek out such a diagnosis. It's already taken plenty of time and energy to obtain FM and neuropathy diagnoses. It's not as if an ME diagnosis would suddenly cure me. But I keep working on my own puzzle under the assumption that I am most likely coping with this family of illness. I do reflect back on onset for clues and triggers, but there's nothing straightforward about that history either.

At this point, what difference does it make? (To quote Hillary.) I'm not even sure a diagnosis from some doctor would alter my tentativeness about, say, an anti-viral treatment protocol.

 

[Seven]

I Think this is more appropriate: Inability to produce energy on demand to sustain simple activities. Vs the inability to sustain consecutive activities comfortably.

Here's a question: if a person with ME keeps pushing it what is their experience: In my particular case, Long term: I loose base energy levels. The loss can be permanent or short term.
Short term: I loose all bodily function. I start loosing voice then I don't hear and then I loose consciousness. This can last hours to days.

I think besides the lack of energy we loose autonomic function, Immune function, And other things in the body that require energy for normal functioning.

 

[Miq]

At this point in my illness I find loosing autonomic function, balance and slurred speech is the first warning to stop what I'm doing. I don't experience PEM much anymore because I'm forced to stop or I may fall over.

 

[Seven]

At this point in my illness I find loosing autonomic function, balance and slurred speech is the first warning to stop what I'm doing. I don't experience PEM much anymore because I'm forced to stop or I may fall over.

I know this is awful to say (don't mean offense) but I love when we get autonomic issues because you can actually be treated: Florinef, midodrine, betablockers, Calcium channel blockers.......
If you are lucky you can address most ME bothersome symptoms and be much more active when you get treated for OI. I am of the personal opinion that is OI that does not allow us not to be more upright (not ME per say). Good luck and I hope you can get some help soon.

 

[EYAKLLE]

@EYAKLLE PEM is not quite simply defined. It is a distinctive feature of this illness though.

i m saying it s an easy thing to understand.
it is not complex....
so many talk about it being a complex disease......
by saying complex u widen the scope of who gets diagnosed...
What s so complex to understand about PEM ??

I ve been on arv s for two years and am much better. Year 1 viread. Year 2 viread n raltegravir. At adapted personalized doses n days per month. Am about to stop them for a bit as feel as if the rv is well under control now. I ve been off them a week so far and the benefit is maintained. I feel like real ME is a non complex easy to understand treatable disease. Instead of complaining about symptoms I think patients could just say what they cant do. Doctors hate us as symptom complainers.

 

[weyland]

What s so complex to understand about PEM ??

If you generalize it to the point of being useless it's not complex; PEM = worsening of symptoms after exertion. I'd argue that by simplifying it you widen the scope of who gets diagnosed with ME. Look how widely adopted the spoon theory is, relatable to basically everyone with a chronic illness. It's what is essentially a description of pacing with the goal of avoiding the unpleasant effects of overexertion. Sounds like PEM to me, and it came from a lupus patient.

It's widely accepted now that PEM is a required symptom of ME (and I guess now CFS since the IOM said CFS is now SEID and SEID requires PEM.) The problem is that what constitutes PEM is not widely accepted. Is it hyperalgesia? Increase in flu like symptoms? Worsening of cognitive dysfunction? Decrease in metabolic capacity? Is it all of these things? Which of these sub-aspects of PEM are required for a diagnosis of ME? We're so far away from medical science understanding the biological underpinnings of what we're calling PEM that we're even farther away from the every day GP being able to recognize a concept such as PEM in a patient coming in off the street. I don't think PEM is the solution to easily diagnosing ME at this point.