Discussion in 'General ME/CFS News' started by Ember, Apr 27, 2012.
Perspective, Understanding CFS | 27. Apr, 2012
While I agree with the conclusion that post-exertional malaise (or preferably PENE) is a cardinal feature of ME, I'm disappointed to see the case definition for such a complex disease as ME seemingly reduced to a single symptom.
I guess i must have missed it. Where is the discussion of the objective biomarker for PEM/PENE that will hold up under double blind research conditions?
Even taken on their own, PEM (here) and PENE are defined very differently. Here PEM is defined as prolonged restoration of muscle power following either mental or physical exertion. The ICC, by contrast, defines PENE as having prominent symptoms primarily in the neuroimmune regions:
The CCC definition of PEM also refers to a tendency for other associated symptoms within the patient's cluster of symptoms to worsen:
Hate to bring it up again but there are people that the PEM Comes and go.
I have gotten PEM better as I get out of relapse. How do you explain those that used to have it and don't have it anymore as they recover. In this relapse, I am getting out and doing 70% today but my PEM is worse than ever (not as before, where PEM improves as I get better).
@Ember: I think, from this paper and others he's written, Jason is saying PEM is the cardinal symptom, but not sufficient on it's own to define the illness: the DSQ questionnaire they are developing looks at many symptoms beyond PEM.
Good point. I pace specifically to avoid PEM so there needs to be context. Unfortunately Jason's DSQ currently rates PEM (ad other symptoms) by frequency and severity regardless of any pacing. So i get post-exertional fatigue regularly but malaise rarely. If I get malaise there's a fair chance I'll have a relapse too; the last one gave me 2 months of solid malaise as well as losing 2 years worth of progress.
Inester7, it would be great to know all the answers why because there seems to be a lot variables. I'm thinking the term PEM is subjective? Are we all feeling the same symptoms? I've had ME for over 20yrs and I've had periods where I felt up to 80-90% improvement for almost 2 yrs and yet PENE (which describes what I feel) is just as severe as when I'm feeling only 30%. It is *always* the same severity no matter how well I am feeling generally.
I have to stay within my boundaries at all times or else . . .
I agree 100%. I would say that PEM is a good distinguishing characteristic of this disease early on, and may be useful for early diagnosis. But many of us are simply too sick to get PEM on a day-to-day basis. We simply don't have the energy to take our body to the limit where we would get PEM.
Going to simplify this a bit - to me PENE is feeling like shit after exertion or after no exertion at all, as long as it's inexplicable. I can now exercise relatively vigorously again but still have days where I feel aches/pains and flu-like symptoms and just crappy, not necessarily correlated to obvious exertion anymore. As nice as it is to try and narrow down the criteria I feel this is somewhat a lost cause for complex conditions like these as people have all sorts of variations and there will be always people wrongfully included/excluded. IMO it would be worth more to focus on healing the individual patient with whatever sticks with them - including thorough testing - and then compare the successes to come up wit therapies that are more generally applicable for chronic pain and fatigue codnitions. This doesn't mean that serious groundwork studies aren't useful, but a functional approach can be taken for the individual without obtaining an explanation for all the cases out there first. Often the experimental or chaotic arm of research/medicine won the race over the ground-work arm (e.g. pennicillin) so both should be supported and patients trying to be treated fully even if this is not fully understood yet.
Ember posted this comment on another thread, I figured it should be slotted in here as well:
Frank Twisk 28. Apr, 2012 at 6:08 am #[/B]
Oxidative stress is just one of the many abormalities induced/intensified by (mental and physical) exertion that could account for PEM. As substantiated in Twisk and Maes (2009):
Exertion induces post-exertional malaise with a decreased physical performance/aerobic capacity, increased muscoskeletal pain, neurocognitive impairment, fatigue, and weakness, and a long lasting recovery time.
This can be explained by findings that exertion may amplify pre-existing pathophysiological abnormalities underpinning ME/CFS, such as inflammation, immune dysfunction, oxidative and nitrosative stress, channelopathy, defective stress response mechanisms and a hypoactive hypothalamic-pituitary-adrenal (HPA) axis.
Using Fukuda et al. (1994) criteria and PEM, fatigue, and a subjective feeling of infection as discriminatory symptoms we recently established that ME, CFS (Fukuda/not-ME) and CF are distinct diagnostic categories.
ME patients have significantly higher scores on concentration difficulties and a subjective experience of infection, and higher levels of IL-1, TNF?, and neopterin than patients with CFS.
Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Chronic Fatigue (CF) are distinguished accurately: Results of supervised learning techniques applied on clinical and inflammatory data.
Psychiatry Res. 2012 Apr 20. doi: 10.1016/j.psychres.2012.03.031.
Maes M, Twisk FNM, Johnson C.
It is time to leave the CFS label and fatigue behind us and to make a clear distinction between ME patients (those with PEM and e.g. cognitive impairment) and CFS patients (those without PEM).
Hi, i took part in the De Paul research questionnaire that they mention. I don't think they are saying PEM or PENE is a main defining symptom, but that it is important it not be overlooked as it ios in some of the definitions. The 2 definitions for the illness that are most favoured by patients both include PEM (or PENE) as being an important and defining factor.
Moving on to other comments about it being a defining feature of M.E, i am becoming convinced that this is not the case. After having M.E for 17 years and not having an official diagnosis until after i had had private testing i am now beginning to wonder if i could have been misdiagnosed. I have never had other conditions ruled out - i have symptoms that would be consistent with LUPUS SLE, Multiple Sclerosis and Sarcoidosis. I have never been tested for these nor had brian scans despite having svere cognitive problems, myoclonus, spastic symptoms and Dysphagia. This recent thought has led me to spend a lot of time recently researching these other diseases and spending some time on thier forums and boards. People with sarcoidosis definately compalin of extreme fatigue brought on by minimal exertion and lasting for days - or coming on after a period of time.
Then i looked at the tests that confirmed i had M.E - tests that show mitochondrial abnormalities, oxidative stress, low antioxidant levels and high cell free DNA. I discovered that both Sarcoid and MS have similar results - oxidative stress, low antioxidant and nutritional status plus high cell free DNA. What my tests tell me is that i am ill - very ill - but not tht i have M.E.
I am no longer convinced that PEM are solely defining features of M.E. Sarcoid and MS patients complain that this symptom and general fatigue are under studied and misunderstood by their doctors, being played down and considered benign, despite wrecking their lives.
I couldnt agree more i think this ties in with what ive been saying here. its all a mess. i was diagnosed about as loosely as one can get .
I'm with you too Justy
Thanks for the link to the other thread Free - we seem to have started discussing the same thing on two threads. I have also been reading the M.E V MS thread (not finished it yet) and the similarities between all these autoimmune diseases is very striking - including the patients experience. It can take people with MS and Sarcoidosis years to get a proper diagnosis - it took me 17 years- and infact i havent been positively diagnosed by anyone - nor had other conditions ruled out.
Why are the researchers who are studying M.E/CFS and PEM not looking at patient experiences in other diseases?
I am beginning to think that only Dr Hydes very rigorous testing with spect scans etc can truly diagnose M.E. Or else we need a review of fatigue in all illnesses with a distinction made about 'our' particular type.
Rambling now because im watching telly at the same time (apologies)
The DePaul group's definition of PEM may have been influenced by their wish to operationalize ME. They write that their group (Jason et al., 2012) has recently tried to operationalize the ME criteria from Ramsay (1988), Hyde (2007), Goudsmit et al. (2009), and the 'London' criteria mentioned in the National Task Force Report on CFS/PVFS/ME (1994). Hence their conclusion that recognizes prolonged restoration of muscle power following either mental or physical exertion as a cardinal feature of ME.
Their description of PENE is incomplete and misleading. And, despite their graphic, they describe the ME-ICC itself with the ME/CFS definition rather than with the ME definitions. Their post refers the reader to Jenny Spotila's earlier one on PEM. Jenny's history includes the Oxford criteria (omitted from the graphic and discussion here) as well as the full CCC definition of PEM. Her discussion attempts to do justice to the complexity of the PEM experience (http://www.cfids.org/cfidslink/2010/060204.asp).
Thanks Ember for the link - it's been a long time since i have read this. I've been trying to find the rest of the series with no luck any ideas? I have to say what she describes in her article very closely matches my experiences - but as i have siad above also seems to match the experiences of some with other autoimmune diseases - although this is not widely discussed by their doctors.
I think its becoming obviouse justy, that the potential for mis diagnosis is huge. the diagnosis can often be so flippent as to be virtually meaningless. in my case i suggested to a consultant at the hospital i was refered to, look ive been reading about this condition called ME it seems similar. After i discussed at the end of the session so what do you think is wrong with me. she said i think it might be what youve suggested. I effectively diagnosed myself, with a hospital consultant agreeing ? then i saw a psychiatrist at such said hospital. who prefered the term CFS and diagnosed CFS, at that time he may not have even known what ME was. I was also classed as having CFS at kings college under there looking for cortisol changes, and one session with simon wessley, which was also very telling, because what i was describing to him was also a little more than what he belived CFS to be, i was describing symptoms of ongoing viral attack, very white face like food poisening. Weakness. fevers sweating. strange itchy sore throats. strange chest irratations. sometimes leading to the green phlem one gets after flu, or a cold. physical changes that were profound, that only ever happen during times of viral or bacterial infection. Yet did he seperate me from hes CFS criteria. Hes other CFS patients. No he did not. After one session. and a rather confused look on hes face during all the time i as talking. i was then left to get on with it. no more referals. no more trying to find a cause of the illness. the classification of either ME or CFS effectively was a washing of the hands of the problem. if i had got worse, and not slowly improved i may have died. like others have. Just like me, left to get on with it even though they are seriously ill. Its crazy. someone should send a letter like this to the prime minister. the queen. some one needs to know people are being misdiagnosed. confused diagnosed. We dont even know what we are diagnosing. or what state of the different Diagnosed criterias ME CFS PVFS someone is actually suffering from. back then. Many specialists barely had heard of CFS let alone ME. A doctor i was seeing, made a comment that somes this all up perfectly. When i mentioned my consultant said im possibly suffering from ME. He said ME whats that ? on hes wall was list of helplines. on that list was a phone number for ME support. I Saw it and said thats ME on your wall. He looked at it, as if to say whats that doing there. He still didnt know what it was. Things have improved but not much. i mentioned ME to one of my doctors recently 17 years after getting the ME whats that comment from the doctor back then. Guess what he said ME WHATS THAT. I said CFS he said ahhh yes CFS. its just a big massive shambles. glad i got better over the years, or they would have let me die, like they have others.
I couldn't agree more Free - everything you say makes sense to me - including the way the diagnosis was made, mine was very similar - more or less a self diagnosis with a doctor agreeing. For me i now wnat to persue alternative diagnoses. Proabably it will turn out to be M.E, but seeing as ive never had anyhting ruled out beyond diabetes and thyroid i think its about time. 4 years ago i was also told i had fibrosis in my lung, by a specialist who then said - oh but its nothing to worry about. Ive never heard another word since from him or my GP about it - looking it up on the net i see its quite a serious problem - and i do have ongoing lung and breathing problems whihc ive been left to manage myself. The dark patch on my x rays and scan was quite large, so how can it be that having lung fibrosis is nothing. How can they have not connected the dots and thought hmm - could be sarcoid now shes so ill with other symptoms. Its not just M.E patients who are being let down - i cant even get a straightforward answer about my lung. And the consultant left me on steroid meds for way too long because they forgot to call me back for an appointment and didnt tell me how long to take them for. I ended up with very serious immune supression and severe systemic candida and hormonal imbalance. I had to take in a paper to show my GP that it could be the steroids causing the problem - but still i didnt get any help. I had pneumonia and pleurisy for nearly a year - at times couldnt breath or speak and was coughing up blood and ringing the doctors 3 times a week - but they didnt send me to the hospital or do a sputum test.
When i told Dr Myhill about all this she was very shocked at it all.
What a mess - then they wonder why we get so messed up - i had severe anxiety for 2 years and still struggling with after effects of agoraphobia (reactive to the illness)
take care, Justy.x
Hi Justy, you are very right PEM is found in MS, Lupus and Sarcoidosis, but not only that it is also found in many other diseases.
The belief that PEM is exclusive to ME is nothing more than a dangerous internet myth that seems to have started by people misreading the diagnostic criteria, manly the CCC then somehow this false belief has become established as if it is a fact.
What the CCC says is that PEM is a cardinal symptom not an exclusive to ME symptom!
The CCC also says that this list of diseases must be ruled out because they can cause the same symptoms as ME/CFS I.E. they can cause PEM
Addisons disease, Cushings Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia,
iron overload syndrome, diabetes mellitus, and cancer. It is also
essential to exclude treatable sleep disorders such as upper airway resistance
syndrome and obstructive or central sleep apnea; rheumatological
disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological
disorders such as multiple sclerosis (MS), Parkinsonism,
myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis,
chronic hepatitis, Lyme disease, etc.; primary psychiatric
disorders and substance abuse
All these diseases can cause PEM and it is far from a complete list of all the possibilities. No Sarcoidosis on this list.
Added to this what is described as the symptom PEM is not a description of a symptom it is a description of a group of symptoms which can vary greatly from patient to patient because they say it can be and/or pain, fatigue or malaise
Post-Exertional Malaise and/or Fatigue: There is an inappropriate
loss of physical and mental stamina, rapid muscular and cognitive
fatigability, post exertional malaise and/or fatigue and/or pain and
a tendency for other associated symptoms within the patient's cluster
of symptoms to worsen. There is a pathologically slow recovery
period.usually 24 hours or longer.
These kinds of symptoms are found in many conditions.
The ICC description is also not one of a symptom but of a group of symptoms that are found in many diseases, Again they say it is a cardinal symptom not an exclusive to ME symptom, and that other diseases that can cause these symptoms must be ruled out although this time they do not attempt to list them.
The truth is that PEM is found in many different conditions that also have the other symptoms being attributed to ME, and no reputable medical source has ever said that PEM is only found in ME, quite the opposite they have said it is found in many conditions.
If PEM was exclusive to ME then it would be one of the easiest diseases in the world to diagnose, but it isnt exclusive to ME it is a symptom common to numerous conditions. As Dr Hyde says on page eleven of the nightingale criteria http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
failure to recover rapidly following exposure to normal physical or intellectual stressors occur in most if not all progressive terminal diseases and in a very large number of chronic non-progressive or slowly progressive diseases.
As is being shown by what Gamboa is reporting in this tread http://forums.phoenixrising.me/showthread.php?17174-My-visits-with-Dr-Byron-Hyde Dr Hyde doesnt just say that the patient has PEM so it must be ME they are given an amazingly intensive investigation and it is expected to take six months before it can be confirmed whether Gamboa has ME or something else.
The unfortunate consequences of this dangerous myth that PEM is exclusive to ME, is that patients believe that having PEM means they have ME and therefore dont push for more extensive investigations to find the cause of their suffering, which can lead many treatable and in some cases fatal diseases being undiagnosed with disastrous consequences for the patient.
Although it is impossible to know exact numbers ME is a rare disease, if all the recorded patients from the sixty epidemics from 1934 to the mid 80s are added up it would be lucky to come to a total of ten thousand people, obviously this doesnt include sporadic cases, but it does show just how rare it has been and all doctors in these times who studied it believed it to be a rare disease. The invention of CFS by the CDC in the eighties has been disastrous to ME research. CFS is not a disease, and not ME, it is a group of symptoms hastily put together by a small group of CDC doctors with almost no experience of ME patients, these symptoms are common to a vast number of diseases, it is a meaningless diagnosis of a none existent disease. Since then it has been promoted as being the same as ME and the numbers of people diagnosed with it has exploded with estimates going as high as 17 million, the majority of these people are misdiagnosed and have another known disease not ME. Dr Hyde finds about eighty percent of his patients dont have ME they have another disease that has been missed by the patients doctors failing to investigate them properly. So it looks as if the chances of having an undiagnosed known disease instead of having ME are far higher.
You are also right that tests that show mitochondrial abnormalities, oxidative stress, low antioxidant levels and high cell free DNA, are found in many other conditions, these tests do not diagnose ME all they show is that you are sick with god knows what, which you already knew.
I dont doubt the likes of Jason and Evans good intentions, but the continual attempts by various groups to re juggle the symptoms of ME to come up with a working criteria are largely a waste of time. The symptoms of ME can vary greatly from patient to patient and overlap with many other diseases it is impossible to write a set of symptoms that prove that the patient has ME, it can only ever mean that ME is one of many possibilities, and the patient will then have to have all other possible diseases ruled out before they can be diagnosed with it. Unfortunately despite the fact that this is a scientific and common sense approach it just isnt happening and ME or CFS diagnoses are being given out at ever increasing rate often with an appalling lack of investigation to rule out other possible causes leading to vast numbers of people suffering needlessly.
On a personal note Justy, Im saddened and disgusted by the lack of investigation you have had, and appalling treatment and really hope you can find a doctor who will take you seriously and properly investigate you to see if any other diseases have been missed!!!!
All the best
I dont even agree with that. I didnt notice PEM for the first year of my illness when I was going like flu like illness coming in which was on and an off thing. I then got hit with major PEM after that.
I think too people define PEM differently even in our own heads. Someone who has suffered with severe PEM in the past may not want to view what they have now which is different as PEM.
I think nothing should be being based on what we "think" but rather how we test with a 2 or 3 day exercise test to see if that person is being majorly postexertionally affected or not.
I'll never be happy with definations which are based on no actual tests!! and just perceptions.
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