A CFS Chart on Every Doctor’s Wall

October 21, 2009

Posted by Cort Johnson

Chronic Fatigue Syndrome (ME/CFS) is complicated. That’s bad enough for patients but for many physicians it’s entirely too complicated – the last person they want to see walk thru their office door is a chronic fatigue syndrome patient. Given the lack of chronic fatigue syndrome specialists – that’s a big problem – there are no substitutes for educated primary care doctors.

Dr. Lerner believes his Energy Point Index Score would help doctors greatly with their ME/CFS patients and that it should be on every doctor’s office wall. The EPIS is a simple chart that allows patient to quickly evaluate his/her activity levels. It ranges from zero (Bed-ridden) to 10 (Normal).

A Key Factor - If Dr. Lerner is correct your ‘energy level’ is the key factor in this illness. If that’s so then the fact that most doctors don’t have a clue how to measure it is a real problem. The most commonly used measure of energy – called the Fatigue Severity Score (FSS) – is a list of multiple choice questions that focuses on symptoms, requires statistical analysis and takes a lot of both the patients time and the doctor’s time. It’s basically a research tool - which was fine in the days when-fatigue or energy level was considered at best a secondary symptom -but is unacceptable now that we have a disease in which it takes central place.

Of course many other symptoms are present in this disorder but Dr. Lerner asserts that the beauty of the EPIS is how beautifully it charts not only ME/CFS patients energy levels but their other symptoms as well. He’sfound that the lower your Energy Point Index goes the more types of symptoms you have and the worse they are. Conversely the higher you go on the Index the fewer symptoms you have and what an interesting insight this is; symptoms really are a function of energy in this disease. If you can reclaim your energy your aches and pains and problems - most of which you probably didn’t associate with reduced ‘energy’ start to drop away. On a basic level Dr. Lerner believes this disease really is all about energy – and this is one reason he’s pushing to have the EPIS in every doctor’s office.

Defining Improvement – The EPIS also charts improvement (or relapse) in a rather definitive manner. Each level represents a large change in functionality and health. The average score of a patient entering Dr. Lerner’s clinic is between three or four (out of bed 2-6 hours a day) but he sees patients starting out at one or two (out of bed 30 minutes-2 hours a day).

At level five you still have a chronic fatigue syndrome diagnosis but you can with difficulty make it through a sedentary 40 hour week job. Level six is a big milestone because you can start devoting some energy to outside activities other than work. Levels six is the first time you don’t meet the CDC criteria for CFS.

If you can make it to level 7 you can have a fairly normal lifestyle except that you can’t exercise. If you’re a patient of Dr. Lerner’s when you get to level 8 you’ll probably start tapering off your medications and you can start a light exercise program. Dr. Lerner has found that pacing is a critical part of recovery. Until you get to eight or nine any exercise is going to push you back down to a lower level. The EPIS is also helpful in disability evaluations because it gives disability judges a quick and easy way to assess the patient’s functionality. Patients can also use it in their day-to-day lives to assess how their treatments are going, if they’re doing too much activity, etc.

An Official Energy Index - Other rating scales have been developed for chronic fatigue syndrome. Bruce Campbell at CFIDS Self Help has one.  Dr. Lerner’s has a leg up because it’s been validated against the Fatigue Severity Score and in several studies. Dr. Vernon recently argued that the ME/CFS research field needs standards – what better place to start than at energy – a key problem in chronic fatigue syndrome (ME/CFS). An IACFS/ME stamp of approval of an easy to assess energy rating would help get an Energy Index into doctor’s offices. I say let the competition begin.

An “In” in the Office – - I see the EPIS as more than just a valuable assessment tool. I see it as something of a blow to medical ignorance. Yes, it will help Doctor’s deal more effectively with ME/CFS but it will also educate them about the severity of a disease is too often dismissed as ‘fatigue’. Look at the first quarter of the index;

  • 0 - Bedridden
  • 1 – Out of bed 30 to 60 minutes a day
  • 2 – Out of bed sitting, standing, walking 1 to 2 hours a day.
  • 3 – Out of bed sitting, standing, walking 2 to 4 hours a day.

Here we’ve gone through almost 40% of the chart and the best we’ve gotten to is sitting or standing or walking 2 to 4 hours a day. The Energy Point Index Score chart looks like a very effective way of getting MDs to get that this is a severe and often disabling illness.

It would be great to see one on every primary care doctor’s wall.

46 comments

{ 46 comments… read them below or add one }

Angie October 22, 2009 at 4:51 am

Well, then…. including bathroom & getting up to feed myself and the 4 leggeds
I am in Level 1 at this point.. If I do ANY MORE than that, I PAY for it Dearly..
I rested all last week, cuz I had a mild River Boat Cruise on Sat..where I would be
sitting the whole time.. Don’t tell my HEART.. it thinks it was still Vertical..
So I have been down (Sun thru Wed) sleeping 18-20 hrs the 1st 2 days..
THANK GOD/by whatever name/ that I had stocked up on food and
had protein drinks and Rx’s supplements/water next to the bed for
when I rolled over ever 4 -5 hrs barely conscious. I live alone and have NO Help.
This is after 22 yrs of this sucker..that has already destroyed my adrenals/thyroid
and now I have POTS from supposed Cardio damage that no one on the West Coast
of the USA can confirm. Are we having fun yet? But I ain’t quittin….
and thanks Cort for your blog. I added you to my blogroll so others
can also find you easier…… ONWARD ME/CFS Army…
You can also Join us on Twitter… We are worldwide…
I Twitter under “ME_CFS_unite”
drop by an say Hello and RT the latest news. to the World ;-)
Awaiting a valid test kit before I jump into anything…
No one HERE knows how to treat anything yet anyway..

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Judith Wisdom October 22, 2009 at 5:37 am

In response to Lerner’s chart to help physicians: While it might help physicians realize there is an illness that is called (unfortunately) “chronic fatigue syndrome” and even gives them what appeals to their notion of a real illness, I think it is best not used until it can be revised massively. I’ll give one MAJOR problem with it. It is well known among patients and ME savvy doctors that symptom severity is very labile though not unexplainable. If I land in the doctor’s office after a very relaxing morning, when someone drove me there and held my lunch, records, etc., I would very likely have more energy, considerable more energy than if I had been drained of energy by several of the million things that can cause that either in the hours or even couple of days before I see the chart-educated doctor.

In fact even I am sometimes shocked at how lousy or how “good” I feel sometimes because of the very complexity of how the disease works just in terms of energy availability. One day I can walk 2 blocks; the next day I can’t manage to talk on the phone. I am sure there are phsiological pathologies that make this so. But it is,aside from the huge range of symptoms besides fatigue that disable many of us, one of the key facts about ME that must be understood and that makes me feel so isolated but put on a good face when people see me after 5 days bed bound and 1 day apartment bound when I come down to the lobby of my apartment building and people say you look like you are doing much better. They think that is a reliable state. Yet it may be well evaporate by the afternoon.

This characteristic is central to characterizing and thus diagnosing or even recognizing this illness (other than the Wesseley version), and that chart wouldn’t capture it at all.

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cort October 22, 2009 at 7:39 am

Good points Judith. I must say that I didn’t provide the complete picture on how Dr. Lerner uses the EPIS. In the examination room he asks the patient when her/his average score is been over the past two weeks I believe.

I do think the EPIS is a valuable tool to help us to give us at least some handle on what is causing all these fluctuations in energy. I think it in combination with Bruce Campbell’s CFIDS Self Help course would work very well as a kind of self management tool to help determine the right activity levels, the right medication levels, foods, supplements, etc. I realize this is by no means a way out of this illness – obviously there are triggers to relapses that we can’t always discern – but I think it is a good way to slowly rebuild as much help as we can within the parameters of this illness.

It is a very complex illness – you’re right that one chart can only encapsulate so much – but it does provide a little chunk of clarity that we didn’t have before.

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Erik Johnson October 22, 2009 at 7:46 am

Dr Peterson didn’t call the CDC for help because people were falling into extraordinary levels of fatigue of any type or on any scale.
He called because their immune systems were screwed up.

Wouldn’t that belong somewhere near the top of any CFS chart?

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cort October 22, 2009 at 8:37 am

No! Its not a cytokine chart or a viral load chart – its a simple energy chart that’s designed to help doctors more easily assess how their patients are doing. In fact viral loads and immune measurements do not consistently correlate with energy or even symptom improvement and that’s straight from Dr. Peterson and Dr. Lerner – both of whom believe viruses are at the heart of this illness. During treatment with antivirals it often takes a long time after viral loads have dropped and immune measures have come back into range – for the patient to feel better – sometimes as long as a year.

I assume that Dr. Peterson called the CDC not because immune measures were screwed up but because he was experiencing a sudden onset of a lot of very ill people who symptoms suggested an infection was going on around. Aside from natural killer cell functioning it’s never been easy to find consistent immune abnormalities in this disease. If I remember correctly he did find indications of increased herpesvirus six activity but remember that herpesvirus six is an opportunistic pathogen – everyone carries it – high readings of herpesvirus six would not suggest the pathogen was sweeping the community.

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Erik Johnson January 26, 2013 at 11:28 am

No, Cort. You have it all completely wrong (again)

Dr Peterson called the CDC because he and Dr Cheney had never seen entire groups of people falling ill with a negative monospot, contrasted against the elevated EBV early antigen and depressed EBNA, which fit the profile of the newly published CEBV Syndrome.
Neither he nor Cheney were about to hang themselves on the line because they had a bunch of sick people, with no proof.

It doesn’t matter if it was easy to find abnormalities in OTHER people.
They were found in THIS group, and it was enough to cause the CDC to create a new syndrome.
Try reading Osler’s Web, before pontificating about CFS.

Ashy October 22, 2009 at 8:00 am

I also feel it is a little limited and is not a one size fits all… there is a big difference between being out of bed sitting for 6 hours (i usually manage more than that) and being out of bed and standing/walking for 6 hours (er, no chance!). So am i level 4?The leap between level 4 and 5 seems huge for this reason. You would have to do a 40 hour week (8 hours of activity per day, five days per week) and that is not just being concious and sitting, it is doing/thinking which is a huge step up. It takes no account of cognitive problems (yes i can sit for 6 hours but can i concentrate as well?) and the increased stress on posture/muscles from that activity. I know it says “with difficulty” but it feels a world away for me to be able to work 40 hours even in my own house. I struggle with the odd email/phone call most days, on top of essentials like bathing and getting drinks/snacks, but i am not always lying in bed either…

Also the “Recovery” phase seems a little premature. I know people who have gone back to work and managed it for some time quite easily, then relapsed: it is hardly a linear process and while we do not know the mechanisms behind these fluctuations or how many people really do recover it seems a little odd to write “recovery” there.

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cort October 22, 2009 at 8:45 pm

I think the focus on the out of bed sitting, standing, walking is meant to be on the ‘out of bed’ part; if you’re out of bed you’re either sitting, standing or walking.

I agree that the step between level four and five is too large. There probably should be a transitional phase between being up – working part-time and working full time. The word ‘recovery’ is odd as well. It is meant to demarcate the points of the scale at which one does or does not meet the CDC criteria for ME/CFS but unfortunately that’s not what it states; it suggests one is in recovery but one can clearly linger at steps 6, 7, 8 or even 9 for many years or forever without recovering. I think that should be clarified.

I also have some quibbles with the ‘naps’ (naps in bed) and how one works those into ones 40 hour workweek. There are some things that I would change with the chart; that said it is difficult in cover all the variables in this illness in a simple chart. I believe a chart like this would be a significant step forward for the medical community; it would illustrate the degree of disability in this disorder and it would give them an easy measuring stick for progress. I think it could be great if the IACFS/ME sponsored a contest to produce a simple yet usable chart like this that would help doctors understand this illness better and assess their patients better.

The most intriguing thing for me about the chart is Dr. Lerner’s finding that energy does correlate with symptom level – I think that’s a really interesting finding.

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CFS Facts October 22, 2009 at 10:06 am

The problem is that some doctors mistake “in bed” as meaning the same as “sleeping” and hit you with a depression diagnosis. I was “in bed” 18-20 hours a day, but sleeping badly only 2 hours of that, and nonetheless refused sleeping pills because he assumed I was “sleeping too much”.

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Marcus Doolette October 22, 2009 at 10:37 am

After looking at the chart I have to agree with some of the comments thus far. Two weeks is a very long time in this disease, and covers a very wide and variable range of energy levels and symptoms. I often sit for very long periods, many hours at the computer or on the couch. And yet walking any distance, even around my flat, can be extremely difficult and exhausting. As one person has already commented, you can sit, but concentration varies considerably and the next day can be spent mostly in bed. Symptoms can change drastictically over a couple of days and for no apparent reason. After 10 years (my second dance with this disease) I no longer have any “good” days.

But Cort also has a good point. I think that this could be a reasonable tool to be introduced into the doctor’s clinic because it can serve as a starting point, a ballpark measure which can be elaborated upon in more detail by the patient during discussion. And it can introduce to the doctor the concepts of CFS symptoms and the severity of post exertional malaise. It is simplistic and general, but could serve a practical purpose for the time being.

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Judith Wisdom October 22, 2009 at 11:24 am

cort:

I thought you might have left the question out about extent of time of fatigue. But even including that it is not ME specific as many people could have a pattern of fatigue that would “pass” yet not indicate ME as the diagnosis nor any treatment.

There in fact are times when fatigue, which I suffer enormously, is not the prime disabling factor. I can have, post-exertionally, gigantic aching, pain, and cognitive problems. Even discounting any tests there are subsets of disabling patterns of symptoms. Also the subsets overlap between patients and between different times in the patient’s illness.

If we’ve got a complex illness that has had very little exposure simplifying is not going to capture the illness. It is validating the practice of medicine as the rote practice it too often is. And our illness can be understood and in understanding it it can educate health carers to the complexity of health and illness across the board.

I have NEVER been helped even a mere scintilla by docs who were sympathetic but weren’t aware that this illness is complex. Doctors do get nervous about not reaching a diagnosis fast. It is part of the ethos of medicine. And when they can’t they turn to shrinkdom and that is not just with ME. We must not encourage that rush to diagnose by trying to help docs recognize that ME is real. They’ll end up frustrated as they continue treating you, or having you as a patient they sincerely want to help.

I think that with XMRV regardless of how fast or easy it makes improvement or cure we are at least being thought of as ill with a complicated illness. And given the state of neuroscience with the idea that the brain is a physical organ but like all organs is sensitive to emotional impacts and/or produces them we are at a moment historically when complexity might be easier to handle.

But not by charts on the wall.

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cort October 22, 2009 at 8:59 pm

That’s one of the interesting questions raised by this chart; are symptom levels really a function of energy? If anyone has an illness that is not susceptible to being easily summed up by a chart it is this one. Modern medical medicine does need a way to fit us in and I think this chart helps; it does demonstrate that extreme disability can occur and it does provide an easy way for a doctor to assess a patients functionality. I agree that the leap from being up to working (from 4-5) is too abrupt.

I actually think this chart introduces a kind of complexity that doctors didn’t have before. Doctors don’t have a way to assess energy levels now; basically all they can do is ask how you are feeling. Here you can point to a chart that describes your degree of functionality; just doing takes the disease out of the purely symptom realm or ‘feeling realm’ and gives them something concrete to work with. The fact that its tiered means they can progress and can assess better how the treatments are working. In this sense I think its probably a somewhat blunt but still very useful tool.

.

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jen October 22, 2009 at 4:56 pm

I don’t find this chart useful, even less so than the hummingbird site’s scale.
On this chart I’d be doing very well since my work is at a computer at home but I guess I do it fulltime, and when symptoms don’t intrude–I’ll get to that in a minute–can run errands in my neighborhood or take walks in the park.
But I have a multisystemic illness (lyme) that is extremely intrusive. Just because I’m doing my work, what if my sinuses are completely stuffed and I can’t breathe, I’m wheezing from much worse mold allergies subsequent to lyme, my eustacian tube is stuffed or swollen or whatever and I feel off balance and can’t hear well from that ear, I feel slightly nauseous, I am having an MCS reaction to whatever…etc etc etc. That’s just TODAY, thank you very much. VERY intrusive and depressing. I would sum it up as “infection and inflammation”–with a kaleidoscopic presentation that varies by minute hour and day.
Or how does one describe feeling extremely “toxic” or as a doc of mine said of HER worst lyme symptom, “as if every day you were having the worst prodromal to a flu ever” (prodromal is right as you’re coming down with the flu but before full onset of the symptoms).
And somebody mentioned the lability as well. This energy chart doesn’t do it for me, or even close. Maybe there’s something I’m missing.

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cort October 22, 2009 at 9:13 pm

Maybe you’re saying that your symptoms are not a function of energy level; that you are at least somewhat functional yet you still have severe symptoms. I think this is one of the interesting question raised by this chart – are symptoms really a function of energy levels? My sense is that in general that they are but that does not necessarily apply to MCS.

Of course the chart is only a beginning; it sets off each appointment with a patient Dr. Lerner has -he gets their EPIS and then digs deeper.

There are pain measures doctors can use but not simple measures of energy. This chart introduces the concept of energy (functionality) in a standardized format probably for the first time for doctors treating ME/CFS patients. In that I think its quite valuable. There’s still plenty of complexity to add to the mix that’s for sure.

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Erik Johnson October 22, 2009 at 9:33 pm

Cort, it was not the fact that Dr Peterson had a bunch of very ill people.
It was because these people were ill in a way he and Dr Cheney had never seen, and it had little to do with fatigue.
The cognitive dysfunction was “striking”, as Dr Cheney put it,
“Nobody could have missed this”.

The samples he sent to Gallo’s lab revealed what was then called “HBLV”, later to be renamed HHV6, but renamed again “HHV6A” after the ubiquitous Roseola “B” variant was discovered.
The B variant is the childhood disease, while the A strain is fairly rare and is so strikingly different in its pathogenesis that it should not have the similar appellation, as this tends to create confusion.
The fact that the common HHV6B was discovered after the rare A variant makes the confusion worse.

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cort October 23, 2009 at 2:11 pm

Thanks for clearing up the HHV6 issue. To say that the illness had nothing to do with ‘fatigue’ (exhaustion would be a better word) is to rewrite history, though. ME has a long, long history not only of cognitive problems but fatigue and also, sorry! emotional consequences. It’s all back in the old ME reports if you ever care to read them.

” In the more modern era the first symptom that Dr. Ryll, a U.S. physician who has conducted the longest continual study of ME patients on record (1975-1994), listed was severe exhaustion. He noted that the ‘exhaustion that occurs in this disease is profound and unusual”. (Although championed by ME advocates for many years Dr. Ryll believes ME, CFS, fibromyalgia and gulf war syndrome are essentially the same disorder). ME advocates often claim the Incline Village outbreak of 1983-85 to be ME yet Drs. Cheney, Komaroff, Peterson, Buchwald, etc. required that patients experience ‘chronic debilitating fatigue’ for at least 3 months in order to participate in the study. Dr. Ramsey in 1986 twice referred to the ‘dominant clinical feature of profound fatigue’ in ME. The Ramsey and Dorsett ME criteria (1990) stated that the first cardinal feature of ME is ‘Generalized or localized muscle fatigue after minimal exertion with prolonged recovery time’. ”

This paper was published pre-CFS by the way; they came up with the criteria on their own. For more on the fatigue/CFS intersection check out this paper . Dr. Cheney did not just get alarmed because patients short term memory disappeared or because they their cognitive faculties had declined. It was all of it!

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John October 22, 2009 at 10:19 pm

Ashy wrote- “there is a big difference between being out of bed sitting for 6 hours (i usually manage more than that) and being out of bed and standing/walking for 6 hours (er, no chance!). So am i level 4?The leap between level 4 and 5 seems huge for this reason. ”

kim wrote- “I am also out of bed all day, but sitting like a lump in an armchair or passively at my computer for hours is not the same a being competent to do anything focused or coherent with my energy-drained body and mind, like a job. Just because I can walk for 20 minutes (not stand) or sit in a chair for several hours does not mean I am functional enough to perform at any basic level of competence and consistency at work. ”

**********************

Exactly- there is such a huge difference between sitting in a chair all day and standing or walking for even 1,2,3,4,5,6,7, etc. hours. I’m out of bed all day long but I rotate between sitting in a chair, sitting on the couch, sitting on the porch, etc. I only walk as far as my mailbox, which I do grudgingly. Sitting and standing/walking shouldn’t be in the same category. I sit all day but haven’t been for a walk in years, which would put me at a 4, as Ashy above, yet I feel as if I would be a 2 out of 10 absolute tops.

The thought of working is a complete joke. My dad, whom I live with, asked me to dust some chairs and I had to keep my arms to my sides and just bend them at the elbow to keep from using my shoulder muscles to dust with because if I did it would have messed me up so bad. Plus what Kim wrote about the brain using energy. I think I’ve read several places that the brain uses 25% of all calories burned in a day.

So that’s the bottom of the chart then when you get to the top of the chart that’s all mixed up too. This chart is a complete non-starter.

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Tricia Watkins October 22, 2009 at 10:22 pm

It think the main point in all this is the word “RECOVERY” right smack bang in the middle of the chart, when there is no known cause at this time and there is not likely to be any recovery until such a cure is found. I also believe that you cannot separate energy from pain and cognitive aspects if you seek an understanding of this illness.

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Jerry (RESCIND) October 22, 2009 at 11:20 pm

I’m amazed at the ignorance of A. Martin Lerner’s contributions to M.E. research that I’m seeing here.

Dr. Lerner was one of the first (very) few Drs. to “come out” and say that M.E. is a viral illness.
He was the first to document cardiac involvement.
The first to isolate active virus in M.E. cardiac tissue.
The first to use gancyclovir. Then Valcyte and Valtrex. Long before Montoya came onto the scene.
He has spoken out against GET in the U.K. and the very chart that’s being discussed here also indicates that exercise is detrimental until one reaches a certain point in recovery. IF one reaches that point.

Leonard Jason has said that heart failure is the number one cause of death in M.E. patients. Paul Cheney can attribute every symptom of M.E. to the sub-acute heart failure he sees in patients. So if Lerner has geared his EIPS toward the myocarditis that he treats, it may very well coincide with other symptoms and morbidity. If anything, it would certainly agree with Jason’s mortality findings.

The HHV-6, EBV and CMV that Lerner treats “may” no longer be thought of as the cause of M.E. with the new findings of XMRV. And Lerner’s EIPS may not be as personalized to each individual’s symptomology as one would like, but to vilify him as a lackey of the insurance companies is simply ludicrous! Those are the kind of statements that that make it open season on M.E. patients for the Simon Wessellys of the world.

An aside to Cort- It’s Energy Index Point Score

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sharon October 23, 2009 at 4:55 am

Agree that this chart is off base. It is a good start but there are too many gaps, like the difference between 4 (me) and 5 – HUGE GAP. Plus, many of us swing back and forth between sleeping (I SLEEP, not sit/rest) for 16 plus hours a day and doing very little back down to “only” 12 hours a day and going to the supermarket. I am in a Zombiefied state when awake and have never been fully awake and alert. Scary. And that “state” is not taken into account either.
So, getting there but not yet there.

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cort October 23, 2009 at 6:37 am

Thanks to Jerry for his post on Dr. Lerner’s contributions. He was referring to a post which has since been deleted which implied that Dr. Lerner was a ‘Judas’ and was the pawn of insurance companies. Nobody has a more distinguished record contribution to chronic fatigue syndrome patients than Dr. Lerner.

Anonymous followed up Jerry’s post with this post (which I accidentally deleted):

“Yet one more doctor who doesn’t listen – and worse – with a kiss of Judas, pretending to be on our side.”

With statements like this, it’s no wonder that most Drs. won’t have anything to do with CFS patients.

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Jerry (RESCIND) October 23, 2009 at 2:58 pm

I’d also like to add that Dr. Lerner was a member of The Canadian Expert Consensus Panel whose criteria was used in the WPI studies, so he is well aware of the many varied symptoms involved in M.E.

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cort October 23, 2009 at 5:01 pm

Dr. Lerner has been at this for a long time and he’s used this chart for a long time. He’s used it in studies and he elevated its effectiveness relative to the Fatigue Severity Score test. I think some people have brought up some good questions; it may not be perfect but it does have a pretty good track record.

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meghan Shannon October 23, 2009 at 4:21 pm

Cort said regarding Ramsey and Dowsett on ME:
“This paper was published pre-CFS by the way; they came up with the criteria on their own. For more on the fatigue/CFS intersection check out this paper”

It was and is more then a paper it is a diagnosis under Neurological diseases World Health Organization, since the 1960′s. I am pretty sure you know that.
I don’t know how many people in the USA know about Ramsey, Dowsett and Richarson’s research and work on ME. Dr. Richardson was part of that paper and he was on the World Health Organization when ME was given a code, right next to MS/multiple sclerosis.
meghan

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cort October 23, 2009 at 4:58 pm

Of course – I should have said pre ‘chronic fatigue definitions’. In the paper they did note the contributions by myalgic encephalomyelitis researchers. They agreed that it was the closest fit but, for whatever reason, declined to endorse the disease as myalgic encephalomyelitis.

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Erik Johnson October 24, 2009 at 7:25 am

Cort, YOU are the one who is twisting history.
No, it was NOT “all of it” that caused Dr Peterson to try and get the CDC to help with this mystery.
It was in response to spectacular life destroying specific neurological anomalies he had never seen before.
Dr Cheney and Dr Peterson had SEEN persistent unremitting fatigue, and this is NOT what impressed them about the illness.
They did not call the CDC on account of fatigue.

Dr Peterson called the CDC after a horrible “flu-like illness” began dismantling peoples lives in a strange manner that defied anything in the medical literature.

The striking feature of the paralytic sensation described by “Yuppie Flu” sufferers is not how much it resembles “fatigue”, but rather, how much it DOES NOT.
In support groups, we talked about how frustrating it was that we could find no words in the English language that described this sensation.
We resorted to “BEYOND fatigue” or “A type of exhaustion like nothing I have ever felt before” to describe this paralysis. And people ALWAYS heard ONLY what they wanted to, and forgot everything except “fatigue” and “exhaustion”.

“CFS” is actually an extremely reliable diagnostic tool to determine who has the illness which received that term.

If someone is obliviously comfortable in describing that sensation in terms of fatigue, then I am MORE than comfortable in saying that they never experienced CFS.

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cort October 24, 2009 at 5:05 pm

Did I say Incline Village was characterized by normal fatigue? Did I say that fatigue was the only reason they called the CDC? No. I said it was the entire package – which included the neurological abnormalities. Look – that statement I provided “Drs. Cheney, Komaroff, Peterson, Buchwald, etc. required that patients experience ‘chronic debilitating fatigue’ for at least 3 months in order to participate in the study” came right out of the original paper. If you ever want to read the paper you’ll see there were few cases of paralytic fatigue or paralysis – I specifically looked for that symptom when I read it – and it did occur but rarely.

I’m sorry I didn’t characterize ‘fatigue’ better. I did put it in quotes. Obviously we’re talking about severe and often disabling fatigue characterized by post exertional malaise.

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Erik Johnson October 24, 2009 at 7:46 am

160 Victims at Lake Tahoe – Chronic Flu-Like Illness a Medical Mystery Story
By ROBERT STEINBROOK, Times Medical Writer|June 07, 1986

INCLINE VILLAGE, Nev. — Sandy Schmidt, 42, came down with the mysterious illness soon after she ran a marathon in San Francisco last July. She got better before becoming sick again this spring, forcing her to quit her job as a business office manager. Running even one mile now would “put me in bed for a day and a half,” she said.

http://articles.latimes.com/1986-06-07/news/mn-9956_1_lake-tahoe

—————————————————————————————-

The anomaly here was that it was bad enough to have a marathon runner who wasn’t recovering after a flu-like illness.
It was the extent and nature of the post-exertion “crash” afterward, which entailed a spectacular loss of immune function.

And when the CDC tried to blame it on protracted EBV that was brought about by a probable overburden of stressors, this was “hotly contested” by Dr Cheney, who refers to “recent evidence”.
The evidence was that EBV was not even present in some cases of this flu-like illness, and could not possibly be a factor.
-Erik

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Khaly Castle October 24, 2009 at 9:01 am

I’m with Jerry. My first reaction to seeing this chart was astonishment that something so simplistic and, frankly, misleading..came from Dr. Lerner. It fits right into the category of what I call “anti-tools”. As others have said, there is no way this can measure the ups and downs. By the way, is crawling to the bathroom considered “out of bed?”

I would never in a million years call what has happened to me “fatigue”. When this first struck me and before I new squat about the illness, I remember trying to characterize it as being run over by a truck and THEN thrown into a boxing match with a prizefighter, being knocked out immediately in the first round and THEN being made to stay in the ring for 12, unable to get up and relentlessly pummeled. Lifting an arm was not a feat of herculean proportion because of fatigue. It was because no matter how hard my brain shouted at my arm, my arm couldn’t respond without pouring every single molecule of energy into it.

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cort October 24, 2009 at 4:57 pm

It sounds to me that your illness was very much about energy ie “my arm couldn’t respond without pouring every single molecule of energy into it” – something Dr. Lerner is trying to get the medical community to be aware. Its odd how quickly the conversation goes south when ‘fatigue’ is mentioned. Yes fatigue is not a good word to describe the exhaustion in this disease but that does not mean that ‘severe disabling fatigue’ is not a factor or has not been mentioned by virtually every paper on myalgic encephalomyelitis that I’ve been able to get my hands on.

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meghan Shannon October 24, 2009 at 9:59 am

I agree with Erik that history is being changed and I am also stunned by Leherner’s chart.
Here is some CORRECT history…if anyone wants a full copy of Dr. Philip R. Lee’s Speech from 1998 I will send it to them in Adobe
I am high lighting some interesting things Dr. Lee said then, for those who don’t know who he is, He was Assistant Secretary for the Department of Health, DHHS twice; first time he was hired by President John F. Kennedy to develop a medicaid system for the sick and elderly, He was sworn in in Jan 1964, under Pres. Lyndon B. Johnson. His second tenure was under President Clinton, to address the needs of people with CFIDS/CFS and Gulf War Veteran Syndrome which at the time was listed under CFS.
Dr. Lee addresses not only the failure of the name Chronic Fatigue, but the FACT that Psychiatrists from the UK have taken ME and changed it to CFS.
Please read below: Meghan

Dr. Philip R. Lee,
(AACFS)
October 10-11, 1998
Cambridge, Massachusetts.

“….I also want to take this opportunity to express myself on an issue that you will be considering at a forum on Monday evening-the change of the name of chronic fatigue syndrome. It is time for a change.”

“Chronic Fatigue Syndrome, Wedner tells us is neither a disease nor a syndrome. It is a committee definition. My own experience with CFS probably began in the 1950′s. I was a fellow at the Mayo Clinic in 1953-1955. One of my most common diagnoses was clinical nervous exhaustion-was some of it CFS? The 1988 working case definition of Chronic Fatigue Syndrome was an important step in facilitating prevalanc3e surveys but it did not differentiate CFS from other types of CHRONIC FATIGUE.”

“During the past decade there have been important developments related to CFS….”

“If there has been so much progress in the past ten years why is it time to change the name of CFS?
First and foremost, most physicians have no respect for the name and it sends the wrong message.
Second, the approach to CFS is now dominated by the biopsychosocial approach that gives excessive emphasis to the social, behavioral, and emotional factors in the presentation and perpetuation of symptoms. The “bio” seems to be missing. While I believe in the psychosocial determinants of health paradigm, this approach to CFS has GONE TOO FAR.
The problem is evidence in the proposed ICD-9 codes for CFS, and the 1996 report of the Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners on CFS in the United Kingdom. The Royal Colleges convened a working group after a request from the U K’s Chief Medical Officer. The group recommended that the term Myalgic Encephalomyelitis be dropped in the UK and that it be replaced by CFS.
In its editorial comment on the report of the working group, Lance noted, “Psychiatry has won the day for now. A decade hence, when an organic cause for at least some cases of CFS have emerged, it would be tempting to ask the committee to reconvene. We believe that the report was haphazardly set up, biased, and inconclusive, and is of little help to patients or their physicians….”

“Dr. Stephen Straus of NIH had a very different view and one that I strongly disagree with.
He wrote in the British Medical Journal: “The report constitutes, arguably, the finest contemporary position statement in the field, and physicians and patients are well advised to read it, but it is sure to engender disagreement on both sides of the Atlantic.” Indeed, it has engendered disagreement…

“Third, the current approaches to CFS, except in a few hands, do not take sufficient cognizance of the research on brain positrom emission tomography, cognitive function, possible biomarkers, electron microscopy, the evidence from past outbreaks, or a number of the studies presented here.
Finally, the overlap of symptoms with Gulf War Syndrome, Multiple Sclerosis, fibormyalgtia, merit a thorough re-examination and the development of a comprehensive strategic plan fro research. ”

” We owe it to the thousands of individuals who suffer from these chronic debilitating diseases to place these issues squarely on the national research agenda”.

“As a first step, I hope the AACFS will debate the name issue actively on Monday, reach a conclusion, and strongly advocate a change before the Department of Health and Human Services CFS Coordinating Committee on Tuesday.”

“Let me close with {a story told by Lyndon Baines Johnson about Winston Churchill, concluding} “so little done, so much to do.”

“Dr. Philip R. Lee
Assistant Secretary of Health, US DHHS 1992-1998, 1964-1967″

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cort October 24, 2009 at 4:52 pm

I have absolutely no idea what this has to do with my comments or Dr. Lerner.

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Erik Johnson October 24, 2009 at 9:21 pm

Cort, we tried to describe this sensation to doctors, and as their minds were simply not prepared to accept our words… we backed down in order not to anger an alienate them, and tried to make an accomodation.
Rather than anger them by fighting about they way they kept shifting the concept back to their own perception, we allowed them to “think fatigue” in the hopes that at some point, their research would lead them to the same “Eureka” moment Dr Cheney had when Dr Suhadolnik showed him the gel electrophoresis plates which showed RNASE L was being chewed up at an absolutely unbelievable rate.
As Dr Cheney described, the hair stood up on the back of his head, because this basically turned the question from “Why are they so tired?” to “Why are they still alive?”

The phenomenon Dr Peterson called the CDC about does not fit on any scale of fatigue.
Not even “severe and disabling” as if one had just “hit the wall” during a marathon.
Ask a marathon runner. They never felt ANYTHING quite like this.

Instead of giving doctors their space, so they could discover the reality on their own, they just locked it in their minds, and now use any partial description in which we ALLOWED them to say “fatigue” as ammunition against us.

I think the time is right to stop backing down.
This sensation is not fatigue. Not on any scale, any level, and it does not belong in the conceptual framework of the phenomenon.
The word is wrong, the concept is wrong, and it simply does not apply.
Until the doctors understand this, they are going to torture lab mice by forcing them to swim until exhausted, and believe that this somehow applies to CFS.

It does not.
Spare the mice, they are being tormented for nothing.

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Khaly Castle October 24, 2009 at 10:17 pm

Erik just made my point, as did you, Cort. I cannot seem to describe this in a way that makes you understand that fatigue is not at all what I am describing. The only way fatigue really comes into play is that it is very “fatiguing” to expend huge amounts of adrenaline (not to mention hard on the heart) to move neurologically semi-paralyzed limbs.

Unless and until a doctor understands that, he does not understand a thing about CFS. This is why I am simply agog at Dr. Lerner’s “Fatigue Chart”.

Measuring fatigue on this kind of grade-school-primer level does more harm than good. It perpetuates the myth. It does nothing to address, or even acknowledge, the Parkinsonian headbobbling or the MSesque loss of limb control. It doesn’t encompass or promote discussion of orthostatic intolerance and zero seds.

It is akin to studying and measuring a skin rash on a peanut reactor while the patient is dying in extreme anaphylactic shock.

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cort October 25, 2009 at 7:24 am

I understand your point Khaly. Perhaps muscle weakness is a better description for you. I think there are two kinds of movement problems in ME/CFS; one is more related to fatigue and one is more related to weakness. Fatigue is associated with muscle pain, etc. and weakness is associated with an inability to move a limb – it is not associated with pain or other sensations. I know someone whom I believe has both problems. If he does too much he appears to suffer from a stroke; cannot talk clearly, can’t move some of his limbs. I think as ME/CFS gets more severe you’re more likely to experience this inability to move; its as if your brain is no longer communicating with your muscles at all.

I think you’re wrong about Dr. Lerner’s chart, though. You fit right in there in the one or two level – bedridden – which basically means unable to move. This is not meant to be a detailed portrayal of the ME/CFS experience. It’s a simple but he believes effective method that getting at stages of functionality. You’re asking it to be something that its not trying to be when you’re trying to shoehorn any other symptoms into it. It’s a starting place for doctors not an ending place. His belief is that symptoms really are a function of energy.

You could round it out by putting a likely list of symptoms next to each stage. Stages I, II – severe orthostatic intolerance, difficulty reading, difficulty watching television, hypersensitivity to sounds, vibration, etc. I think that be pretty difficult; I’ve always been much more functional than many people – I’ve always been around a six or seven but MCS symptoms at one time were probably around a one or two level.

But how to fit fatigue into a doctor’s conceptual experience? Obviously you have to attempt to create a bridge into their world (don’t you?). Dr. Cheney certainly realizes this – he and Dr. Peterson and Dr. Komaroff used ‘severe disabling fatigue’ of three months as a prerequisite for been enrolled in their Incline Village study. I think severe and disabling says alot. Dr. Cheney and Dr. Enlander and others used the word fatigue to start a journal – they obviously felt it was the best word for that journal which means that given all the different parameters – its descriptive ability, it’s evocative ability, it’s communicative ability – that is the best word they could find. No word obviously is going to be perfect.

So what word would you use – exhaustion?

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Sue Jackson October 25, 2009 at 5:03 am

Hi, Cort! Sorry I haven’t been by in a long while. It’s been a rough season for me.

I was also intrigued by Dr. Lerner’s new energy scale chart. I’ve always been partial to the CFIDS Fatigue Scale that Dr. Bell developed that ranks functionality from 0 to 100. I “normally” am at about 50 on that scale but this past month have been at 20-30.

I’ll try to stop by more often – I always enjoy your posts!

Sue

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Erik Johnson October 25, 2009 at 8:12 am

Researchers were surprised to find that testing did not necessarily indicate a disabling degree of muscle-weakness that was commensurate with patients vehement complaints of an inability to control their limbs.
The motor control dysfunction and loss of fine motor skills that made patients drop objects out of their hands, lose the ability to write legibly, manipulate coins, trip over irregularities on the ground scarcely half an inch high… and the way they would try to walk squarely through a doorway… and miss!… should have clued in the doctors as to what was really going on.
It was a peculiar loss of ability to exquisitely control muscle coordination, which is a completely different paradigm.

This is why some of us keep insisting that the sensation should be emphasized as neurological paralysis instead of muscle-weakness.

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cort October 27, 2009 at 1:28 pm

I agree with all those symptoms and have experienced them myself. Muscle weakness as I pointed out, is not characteristic in this disorder. I think the loss of fine motor control has really been almost completely ignored in this disorder. It would be interesting to create a hierarchical chart of fine motor control and see where patients fallout on that.

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Khaly Castle October 25, 2009 at 9:01 am

Cort,
I am not describing muscle weakness. I am describing neural apoptosis. Everything Erik said in the above post is dead on. This is what he and the Incline Cohort experienced, it is what I experience, and it is what every one of my CFS friends experience. Dropped feet, restless legs, inability to navigate, falling without tripping, even seizure activity. Inability to control muscles does not equate to muscle weakness.

And, so that you can see how misleading the chart is, I am actually NOT bedridden. I am quite active and my muscles are strong. The neural symptoms are episodic, and seem to correspond exactly with toxic mold exposure. I have learned to control this to a great deal by avoiding mold toxins a la Erik. It is hugely within the realm of my reality that I can hike the lower trail of the nearby mountain one day, and be dropped to the floor in an instant the next.

The problem with the chart is that in the hands of the medical profession at large, it is just another tool to levy my illness into the fatigue mumbo jumbo category.

Regarding The Journal Named Fatigue, let’s not forget to mention the huge outcry of justified indignation within the PWC community when THAT gem was announced. The choice of the word has such deep political connotations that it is indefensible. Why not just call the journal “CFS” and then fill it with documentation that pushes the name into legitimacy? I can think of a lot of names that would have been better. The other “F” word would have been better.

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Jerry (RESCIND) October 25, 2009 at 9:03 am

I never said Lerner was ignorant.

Lerner’s chart never mentions “fatigue.”

So how does one boil down all of the varied symptoms into the average 7 minute Dr.’s visit if ANY chart is going to be on EVERY Dr’s. wall? Most patients’ worst symptoms are not simple fatigue, but when the symptoms are acting up, they are in bed. My first impression of Lerner’s scale was the same as everyone else’s here, “oh no, it’s based on fatigue.” However, I think some burden needs to be placed on the patient to interpret the Index to correlate with their symptomology. For instance, crawling to the bathroom is not considered out of bed sitting, standing or walking around.

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Erik Johnson October 25, 2009 at 12:10 pm

It seems to me that the Karnofsky scale is pretty much already in every doctors office, for it is very well known and has been used in CFS for years.

The uncomplicated point that I was making is that CFS is not a case of low energy in the way that most people conceive of that concept,
but rather, is a neuro-immune disorder instead.

And if one was constructing another “CFS chart” to hang on every doctors wall, one might as well put that information on the very top.

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John Connor October 27, 2009 at 10:36 am

Because things are complicated enough as is…

J. Connor
Professional coding billing
coding ICD 9 expert

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misskoji March 2, 2010 at 10:13 pm

Lerner patient here.
I have asked Dr. Lerner about his EPIS.

How would he like me to answer this, I asked. Was it how I felt that day, that week, that month? His answer was, to average it out since my last visit to him. I visit him monthly.

I too, had a hard time wrapping my mind around this at first. Since I don’t spend all my time in bed, neccesarily. But, I move from the bed to the couch, to the chair, ect. So, I figured that my time laying on the couch would be the same as in the bed, since I do nap there at times. He doesn’t require you to count all your time in bed as sleeping. I figure in my time sitting up just as that, and so on. It’s not a perfect scale, but one would be hard pressed to make a perfect one, really.

I am about a 3-4 on his scale. He is a wonderful man and a caring, compassionate doctor. One like I have never had the pleasure of knowing before. I feel truly blessed to be his patient. Even though he does have some tight restrictions (eg, no supplements while under his treatment) I trust him completely.

I have talked to many of his patients. In forums, chatrooms, and in the waiting room. Experiences range from almost completely recovered, to three years on treatment with cognitive symptoms dissapeared but fatigue unrelenting, to very little improvement after 6 months. I’m hopeful.

I digress. I just thought I would point out what he told me about his scale.

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admin March 3, 2010 at 7:13 am

Thanks for the first hand account! I hear the same; many different types of stories – from incredible improvement to very little; I suppose every legitimate treatment in CFS has a range of outcomes. Good luck with it!

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Brenda February 24, 2012 at 6:34 am

I am looking for a set of pages that used to be on the internet:

Dayle Ann’s fatigue scale
Dayle Ann’s pain scale (fibromyalgia)
Dayle Ann’s activity chart

These aren’t perfect, but I have used them to keep a log for two weeks at a time. Now, my hard-drive has crashed and I do not have $ to recover the contents. I need these scales and worksheet and they have disappeared.

Does anyone know where they are availabe on the internet? Thanks.

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Cort February 25, 2012 at 11:07 am

Wish I could help Brenda but I don’t know.

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