When is post viral illness PVFS and when is it ME/CFS? Discussion.

[Kitty]

This is why we need a definitive and clear understanding/mechanism for the pathophysiology of PEM. The other symptoms won't continue to remain the issue of whether we have ME or CFS.

If post-infectious COVID patients turn out to have the PEM I suffer from, then I will be satisfied that we have similar pathologies?

I think we need to take a cautious approach, though, since it's possible the broad phenomenon isn't even unique to people who go on to develop long-term symptoms. People making a slow recovery from glandular fever, who aren't familiar with PEM as a concept, may describe it the same way as ME patients do. Eventually, they return to their previous lives.

There may be some aspects that are particularly associated with ME, but the overall pattern – the triggering of multiple symptoms that occurs after effort or stress, and following a delay – might just be one of the ways our bodies respond to certain circumstances.

It would be useful to understand it better, of course, because it could give us important information about what goes wrong and why it doesn't right itself.

 

[Mij]

I think we need to take a cautious approach, though, since it's possible the broad phenomenon isn't even unique to people who go on to develop long-term symptoms. People making a slow recovery from glandular fever, who aren't familiar with PEM as a concept, may describe it the same way as ME patients do. Eventually, they return to their previous lives.

Agree. My first experience with PEM (30 years ago) was very different from what I experience now. I was able to do some light exercise at the beginning, but when I went too far I would experience terrible leg fatigue/cramps, one time it lasted 6 months. My legs felt like hot/wet towels, I could barely walk, but I did not experience cognitive impairment, overall muscle fatigue or the need to say lying down for 2-3 days. The PEM changed over time and became worse the more I exercised.

During my last PEM experience (4 years ago) I almost called 911. It was a scary experience. So no more, I pace and rest.

 

[Mithriel]

With due respect, to refight old battles over the name and to claim that CFS is just fatigue reopens old wounds for those of us who live in places where CFS is the dominant name used to describe our illness.

I do not agree that the name choice of CFS is a "deliberate ploy" to destroy ME as a separate disease, nor do i I think ME is a very accurate name to describe our condition.

The UK and the USA have different preferences for what we call this illness. Beyond the preferences there are no established differences.

As a compromise the illness is generally called ME/CFS in international circles.

The BPS people don't think ME is any more real than CFS. When CFS is conflated with simple fatigue it repeats the offense that BPS people caused in the UK.

Bill

I am not fighting a battle over names. I am talking about where the name came from and the difference at the time was devastating to those of us who had a multisystem disease that suddenly had a new name and worse still different symptoms. It was like a military coup and was designed to destroy ME as a disease. It is over thirty years ago now but that is how it started. And Myalgic Encephalomyelitis describes my symptoms very accurately.

Nowadays they have started to use ME because it is more palatable to patients and the ordinary doctor will use the names interchangeably

I was replying to clarify my posts which were about the dangers of the way PEM is being used nowadays. It is the definition of PEM I am arguing about not the name of our disease.

If PEM is allowed to be used to mean very fatigued and feeling ill after exercise it will continue to be used to broaden the concept of ME/CFS and it will destroy any chance we have of getting ME treated and researched properly.

I can only speak for the UK but the BPS ideas are being accepted round the world and I can foresee another 30 years of neglect and suffering.

We have Paul Garner claiming he had CCC ME yet he got better by thinking his disease away. Presumably he felt bad after exercise - he described it in his blogs - and thought this meant he had PEM.

It is bad enough if other longcovid sufferers believe they have PEM instead of the exhaustion when you do too much that happens with any post viral, we will get lots of people telling us how X,Y or Z cured them, why don't you try it, but the BPS people will use it to show they were right all along with their theories and we are all only ill because we want to be.

This is a real threat to our well being. The description of ME for getting benefits in the UK said that people with ME think they can't walk but they could if they wanted to.

 

[Bill]

I am not fighting a battle over names. I am talking about where the name came from and the difference at the time was devastating to those of us who had a multisystem disease that suddenly had a new name and worse still different symptoms. It was like a military coup and was designed to destroy ME as a disease. It is over thirty years ago now but that is how it started. And Myalgic Encephalomyelitis describes my symptoms very accurately.

Nowadays they have started to use ME because it is more palatable to patients and the ordinary doctor will use the names interchangeably

I was replying to clarify my posts which were about the dangers of the way PEM is being used nowadays. It is the definition of PEM I am arguing about not the name of our disease.

If PEM is allowed to be used to mean very fatigued and feeling ill after exercise it will continue to be used to broaden the concept of ME/CFS and it will destroy any chance we have of getting ME treated and researched properly.

I can only speak for the UK but the BPS ideas are being accepted round the world and I can foresee another 30 years of neglect and suffering.

We have Paul Garner claiming he had CCC ME yet he got better by thinking his disease away. Presumably he felt bad after exercise - he described it in his blogs - and thought this meant he had PEM.

It is bad enough if other longcovid sufferers believe they have PEM instead of the exhaustion when you do too much that happens with any post viral, we will get lots of people telling us how X,Y or Z cured them, why don't you try it, but the BPS people will use it to show they were right all along with their theories and we are all only ill because we want to be.

This is a real threat to our well being. The description of ME for getting benefits in the UK said that people with ME think they can't walk but they could if they wanted to.

We have very different perspectives over the term CFS. It was a huge step forward for the CDC to come up with a highly improved term from what had been called in the media "yuppie flu."

I don't agree--from my perspective--that the term CFS was "like a military coup and was designed to destroy ME as a disease," but rather that it was an empowering term that gave those of of here in the USA (and elsewhere) a name to a condition that I'd suffered with for years that had no name (other than yuppie flu or Incline Village disease).

As I have said, we have different cultural and historical perspectives on this point. ME was never used in country. ME as a term has a myriad of problematic aspects. Our illness is not defined by pain. I don't have "myalgia" as part of my disease expression. That name (if taken at face value) cuts me out of the cohort, when I've qualified as having CFS and ME/CFS under every diagnostic criteria including CCC. I also don't know that we all have brain swelling ("encephalomyelitis") as part of this illness. I think the name ME causes "rolleyes" among physicians and other scientist who understand the Latin meanings and that trivilizes our condition vs the far more accurate term "chronic fatigue syndrome." So I'm not a fan.

ME is not more more palatable to me. ME does not describe my symptoms at all, unless I have a swollen brain stem that is yet unproved. But I do have a syndrome whose primary expressions are chronic fatigue with PEM and cognitive difficulties (aka brain fog).

I accept the term ME/CFS as a compromise, but find the name fight draining. I wish we didn't expand an ounce on energy over an issue that divides our community.

I think that if PEM (as we know it) is experienced by people with Long Covid, that there will be far more of a chance that we will see progress eventually made towards understanding the mechanisms that cause PEM as a result of the research efforts that are likely to follow this pandemic. So, again, we have alternate perspectives. That's OK.

We don't have the same issues here in the USA with the so-called BPS crowd. We have had challenges with the medical community and the general public that are different than the ones in the UK. I think I understand the issues and hurts some feel there.

Please understand that we tend to have very different opinions around the terms used. The biggest issue here was ending the conflation of CFS--a syndrome--with simple fatigue. That took effort and we, in the main, succeeded. So it is very difficult to come to a forum or other places on the web and see our disease once again conflated with simple fatigue.

What we name our illness isn't the cause of our illness. It is just a name. People in different countries have differing attachments to the names by which we know this illness. ME and CFS are currently defined by the CCC as the same illness (ME/CFS) under the diagnostic criteria. I wish we'd leave it at that and accept that different communities have different naming preferences and that all people with this illness deserve equal respect regardless of what we call this illness in our home countries.

Bill

 

[Hoopoe]

PEM as per Ramsay could be summarized as muscle fatigueability weakness, where PEM as per the ME/CFS concept could be summarized fatigue, sickness and symptom amplification.

Is muscle weakness always clearly distinct from fatigue?

When I have what I consider severe fatigue I'm unable to exert the same muscle force as when having only normal fatigue. Does muscle weakness not mean weaker muscles but flaccid muscles?

I'm wondering if the same postexertional phenomenon, allowing for some variability between patients, could be plausibly described either as Ramsay PEM or ME/CFS PEM.

 

[Bill]

PEM as per Ramsay could be summarized as muscle fatigueability weakness, where PEM as per the ME/CFS concept could be summarized fatigue, sickness and symptom amplification.

Is muscle weakness always clearly distinct from fatigue?

When I have what I consider severe fatigue I'm unable to exert the same muscle force as when having only normal fatigue. Does muscle weakness not mean weaker muscles but flaccid muscles?

I'm wondering if the same postexertional phenomenon, allowing for some variability between patients, could be plausibly described either as Ramsay PEM or ME/CFS PEM.

Not sure, but I don't experience (as best I understand it) muscle fatigability weakness following exertion, I have fatigue and symptom amplification that always includes increased brain fog. My muscle strength remains fine, i just lack the energy to use them without triggering a crash. So Ramsey is not the man I personally look to to define the illness, with all due respect to the doctor.

It seems to me that there are multiple expressions of the condition we know as ME/CFS. Some people experience some and not others. I'm truly sorry for those who check all the boxes.

At this point we lack medical evidence to prove whether we are dealing with separate illnesses that have similarities or just forms of the same thing. Declarations otherwise are speculative and by definition they are divisive. We just don't know. i'd prefer to work with other people who fit the CCC and other diagnostic criteria under the assumption we are experiencing something similar and hope very much that medical science figures it out before I expire. In the meantime I hope we all treat each other with kindness and respect.

Bill

 

[Mij]

Is muscle weakness always clearly distinct from fatigue?

The answer is yes according to the doctors and specialists I saw.

 

[Hoopoe]

If fatigue and muscle weakness are clearly distinct, why did Ramsay say that the way to differentiate between ME and other postviral fatiguing illness was illness duration and symptom variability throughout the day, rather than one group having muscle weakness and the other having fatigue?

 

[Mithriel]

It was all a bit confusion at the time. There may be written records or other people know more than me but when I first joined the ME association in 1984 Dr Ramsay was the patron and he wrote articles, gave talks and still saw patients. We spoke about myalgia and deep burning pain in the legs after exercising and other problems associated with exertion. There was an acknowledgement that it often took three days before any bad result from exertion was seen. I don't remember it being defined as such.

The symptoms of ME were also acknowledged to vary, from hour to hour, day to day, month to month.

Suddenly, the likes of Wessley began saying that ME was just a point on a spectrum of fatigue and people who felt tired all the time had the same disease.

That is when Ramsay said that feeling fatigued all the time did not have the variation of symptoms that ME had so could not be the same disease. he also said that if you got better with exercise you could not have ME as people with ME got worse with exercise.

So he said these things in response to the claims of the BPS people. He was countering their general claims rather than laying down strict diagnostic points he would have used for a patient. I presume he was bewildered that barely qualified doctors could sweep in and change everything about an established disease.

 

[Bill]

It was all a bit confusion at the time. There may be written records or other people know more than me but when I first joined the ME association in 1984 Dr Ramsay was the patron and he wrote articles, gave talks and still saw patients. We spoke about myalgia and deep burning pain in the legs after exercising and other problems associated with exertion. There was an acknowledgement that it often took three days before any bad result from exertion was seen. I don't remember it being defined as such.

The symptoms of ME were also acknowledged to vary, from hour to hour, day to day, month to month.

Suddenly, the likes of Wessley began saying that ME was just a point on a spectrum of fatigue and people who felt tired all the time had the same disease.

That is when Ramsay said that feeling fatigued all the time did not have the variation of symptoms that ME had so could not be the same disease. he also said that if you got better with exercise you could not have ME as people with ME got worse with exercise.

So he said these things in response to the claims of the BPS people. He was countering their general claims rather than laying down strict diagnostic points he would have used for a patient. I presume he was bewildered that barely qualified doctors could sweep in and change everything about an established disease.

In my own case, I've never experienced a "deep burning pain" in my legs (or anywhere else in my body) after exertion, nor do I have myalgia, so I'm not too keen on Ramsey's definitions as characterized here. Nor with a name like ME that presupposes one has myalgia by definition.

Nor do I improve with activity that exceeds my energy envelope. Instead I experience a variation of symptoms and PEM crashes that are entirely consistent with what's described in the literature as typical of ME/CFS. And that was true for decades before I ever heard the term ME.

It seems to me that those like Wessley have belittled people with this illness regardless of whether the term CFS or ME is used. And I understand the general medical/cultural preference for the term ME in the UK. It isn't a preference I share. That's OK.

ME/CFS works fine for this person as a compromise term. Using the term ME has not solved the problems you all have with the BPS crowd as far as I can see. Not a bit.

As far as I can tell we suffer from a common illness as defined as ME/CFS under current CCC diagnostic guidelines. No difference other than the name employed. And I see no evidence that suggests otherwise.

Bill

 

[Mithriel]

Ramsay was one of the doctors during the Royal Free Epidemic. Myalgic Encephalomyelitis was based on the symptoms of people who took ill then and did not recover and from similar patients after other epidemics which were thought to be enteroviral.

If ME/CFS is a consequence of other viral infections as well, maybe the symptoms can be slightly different. Myalgia was a core symptom of the Royal Free patients and many of us who had an enteroviral onset.

 

[Kitty]

I've never experienced a "deep burning pain" in my legs (or anywhere else in my body) after exertion, nor do I have myalgia, so I'm not too keen on Ramsey's definitions as characterized here.

I think Dr Charles Shepherd of the UK's ME Association shares this lack of muscle pain with you. When researchers design surveys, it probably ought to logged positively in case it's an important clue (rather than glossed over as an unticked box because symptoms always vary between patients).

It might just be an unticked box after all – but it seems more interesting than, say, the fact that unlike a lot of folk, I don't get more headaches than before I got ill.

 

[anniekim]

The BPS people don't think ME is any more real than CFS. When CFS is conflated with simple fatigue it repeats the offense that BPS people caused in the UK.

Regarding BPS people thinking ME is not any more real than CFS, I note in a talk by U.K. Prof Peter White - one of the major U.K. bps proponents (now retired) - he gave in 2008 at a CFS conference at the Royal Society of Medicine (used to be available on YouTube) he claimed ME was a neurological illness that happened decades ago in epidemic outbreaks such as the Royal Free hospital in 1955. He implied to his audience ME does not exist in endemic form and was an illness of the past, ignoring that a conference at the RSM in 1978 recognised ME as being an illness that had occurred both in epidemic and subsequently endemic forms.

He said the illness they study today - which he called CFS (White used the v broad Oxford CFS criteria) - is different from the neurological illness that happened in outbreaks decades ago and was labelled ME. So he recognised ME but viewed it as entirely different and separate from his and colleagues made up ‘CFS bps model’. A model - names aside - I know we all agree is bogus.

 

[cfsandmore]

Substantial reduction or impairment in the ability to engage in pre-illness activity that persists for 6 months or more and is accompanied by fatigue.

Fatigue is an accompaniment.

Ramsey had limited evidence of muscle weakness. Ramsey used the same hand squeezing that my local physician used. I was a blue-collar worker, I had strong hands. My local physician noticed the muscle weakness by having me squeeze his hand. Much later when I saw Dr. Cheney he had a gadget that measured how strongly I could squeeze my hand, so he could track muscle weakness in my forearm. The muscle strength fluctuated.

ME/CFS causes muscle weakness. This is revealed by the results of the second-day Cardiopulmonary Exercise test. The heart reveals it was weakened by the exercise on the first day's CPET test. The heart was so weakened, according to the American Heart Association an MECFS patient has heart failure. (We know we do not have heart failure if we are allowed to rest and given time our hearts return to baseline.) Cardiopulmonary Exercise tests are measurable and replicable.

Fatigue doesn't cause the heart muscle to weaken. Out-of-shape people were given two-day CPET tests. They were fatigued on the second day, but their hearts weren't weakened by the first day's CPET. Their heart improved because they exercised on the previous day.