Post Exertional Malaise

[Ian123]

Post-exertional malaise a defining, compulsory and cardinal feature for diagnosis under most current criteria. The term "malaise" defined by wikipedia as: a feeling of general discomfort or uneasiness, of being "out of sorts", often the first indication of an infection or other disease. This poor description of the symptoms caused the term PENE (Post-Exertional Neuroimmune Exhaustion) to be used as a mandatory requirement for the International Consensus Criteria more accurately describing the exacerbation of symptoms that were described by patients.

But what is PEM? - depending on how you look at it, PEM could refer to the increased pain and fatigue people with ME/CFS experience after exercise, reduced aerobic energy production during exercise, an earlier entry into anaerobic energy production, reduced cognitive results on tests, impaired pain regulation, increased activation of the complement system, increased oxidative stress, and finally changes in gene expression (gene expression research by Alan and Kathy Light Utah University)

The Cook/Light/Broderick research into defining and deciphering PEM in terms of what is actually happening that can be related to symptoms experienced, uses maximal exercise (test to exhaustion) as the stressor with blood tests pre and post exercise.

This study, which was published in 2013, found startling changes in several receptors. These included an adrenergic (sympathetic nervous system) receptor and the NR3C1 receptor that binds with cortisol. A receptor that regulates ATP production (P2X) tanked at 48 hours and then basically disappeared at 72 hours in the ME/CFS patients. The opposite pattern prevailed in the healthy controls.

NRC31 is the receptor to which cortisol and other glucocorticoids (steroid hormones such as hydrocortisone, prednisone, and prednisolone) bind. This receptor is found in the cytoplasm of the cell. After cortisol flows through the cell wall and attaches to it, it’s transported into the nucleus where it affects a variety of genes. Found in almost every cell in our bodies, NRC31 turns on or off genes involved in metabolism and immune functioning. Glucocorticoids turn the immune system down by upregulating anti-inflammatory and downregulating pro-inflammatory cytokine levels. According to Wikipedia, NRC31 also appears to play a major role in regulating the effects of stress on the brain. Cortisol also spares glucose in response to exercise. This was the first time gene expression of the cortisol receptor had been studied in response to exercise. The increased levels of inflammation expected with an upregulation of this receptor are what we would expect to find in ME/CFS. The significant increases in this receptor seen after exercise in the ME/CFS patients could reflect an attempt to make more glucose available for energy or, perhaps more likely, reflect an attempt to reduce inflammation induced by the exercise.

An analysis of the symptoms elicited by the exercise revealed a remarkably heterogeneous group, memory and concentrations were highlighted in some people while headaches were the biggest component in others one unfortunate person suffered from headaches, chills, and muscle pains. Muscle pains were almost the sole issue for one person, while another person’s joint pains improved markedly. While most people got worse, a few people actually got a bit better – one person’s joint pain improved markedly. Exercise clearly has very different effects in different people with ME/CFS. The whole issue of symptom expression is complicated by the fact that many peoples’ symptoms, even at baseline, are already near the top of the charts. Even though they feel much worse after exercise, according to the charts they can’t get much worse! This “ceiling effect” complicates assessing symptom changes after exercise.

Cognition

If you feel that thinking is harder after activity then PEM affects on symptoms show the opposite outcomes that healthy controls exhibit with an improvement in brain function with exercise.

If practice makes perfect then the more the brain is is used performance should increase, which it does for healthy controls but acts as a stressor with diametrically opposite results in ME/CFS getting worse the more cognitive function is tested.

Sustained attention was already poor at baseline, but it takes an even bigger hit after exercise. Other areas of the brain work extra hard to compensate – making cognition more effortful – but the effort largely fails and the errors mount and mount. By the end of the test the ME/CFS patients were making about double the errors of the healthy controls. Plus their symptoms – whether it’s headaches and chills in one patient or muscle pain and trouble concentrating.

A reduced ability to think after exercise is documented and tied to changes in brain functions. Reductions in the ability of ME/CFS patients ability to sustain attention stand out, as does the need to engage more regions of the brain than usual to do mental exercises. People with ME/CFS also get worse, not better over time, when they engage in mentally fatiguing exercises. Healthy people react in the opposite manner at all points; in contrast to the people with ME/CFS they do better over time and after exercise at mental tests. Cook essentially documents and expands on the debilitating effects of exercise on ME/CFS which NICE are still recommending in the form of GET (graded exercise therapy) in their guidelines that have been in place since 2007.

[RockRose]

Dear Ian, very interesting research, as is all that you are posting here. Thank you so much Whilst I actually 'can't' digest the full details, yet absolutely I get and appreciate the 'gist' ....which is (if I read right) that there are very REAL and actually DETECTABLE explanations of Post Exertional Amplification...(or PEM or PENE etc.)

I personally can experience upto 36 hours absolute payback (= flat out in bed, hardly able to move) following a mild, warm and enjoyable shower of 10 minutes. I don't think I could possible imagine that...being a soul who actually loves and treasures life ! Its good to think that some of the digging is getting somewhere. I wonder how much this info is being absorbed by UK NHS and NICE?

Thanks again for all the sharing..and kind of encouragement along the way.

Best wishes,

Rock Rose

[Ian123 in reply to RockRose]

The research that quantifies the effects we experience is of some help for us although we know the realities, the evidence gathered will give our support networks and society in general a much clearer picture of the obstacles this illness presents.

I believe we can have some hope because the medical politics involved have changed more in the last five years than the previous thirty, though as noted by the Speaker of the Scottish Parliament “the cold grip of psychiatry is still far too deeply rooted in the world of ME”

The fight goes on with rest breaks as necessary

[RockRose in reply to Ian123]

Ian, I so appreciate your reply.

Including the rest breaks as necessary.

Living this process in the way that is supportive, whilst also channelling energy to shift that 'cold grip of psychiatry' that is too blinkered to understand that whole picture.

I'm also encouraged by the recent, welcome shifts. They are beyond overdue, aren't they...and there is a way to go, yet this is absolutely fantastic and I'm celebrating the beginnings of some light on the horizon.

Actually, Ian (and other members here) in the interests of transparency, I'd like to share my current personal perspective (which is always open and adapting as I go along).

I have quite a strong leaning towards a holistic and integrated level of understanding, recognising that absolutely there are physical dimensions in this condition....whilst also recognising that we are whole human beings, physically, intellectually, sensitively, and other levels besides...

And what I see so far, is that our medical system has become so atomised, into different specialities, that within Western medical practice there is a complete split - firstly, between different parts of the body (and systems within the body), and also splitting the body and the mind / emotions... And then we have yet another split, the one between medicine and 'social care' which I also see as unhelpful. Draining resources of those who have little resources to attempt to marry the various systems together and create the best well-being possible !!

Where I'm coming from, is that I would far rather a more integrated way of seeing, that looks at the whole person...integrating best research from Western medicine alongside healing practices, for example, like Chinese medicine appears to embrace and cultivate, through traditions like Acupuncture, T'ai Chi and Chi Gung....

I see the split into atomised areas of expertise, rather than looking upon the whole... This is what I see as our current 'system' of medicine, rather than an integrated approach, which I myself have practiced in a former life...in a beautiful multidisciplinary approach which actually helped the person at its centre to heal and recover...which was coordinated to place the person at the heart of care...listening to them...responding and supporting them both practically and in other ways.

For me personally , this experience sometimes becomes quite ridiculous, because I end up having (somewhere around in my orbit...) a physio, an OT, an EMDR specialist, a GP...and then because my work are (in some ways very kindly) holding-open my job for me, I also have HR and colleagues - and this is burning-up unavailable reserves !!!

Simply coordinating these takes huge energy that I don't have. And actually, I don't believe any of the professionals that I've experienced so far are actually totally 'misguided ' in what they're attempting to do...yet the lack of integration wastes huge swathes of energy, at least for me and I dare say many others.

I wonder if any of this resonates with your own experience? I wonder what you think?

I share all this in the spirit of a 'working belief, as by nature, I'm not overly 'fixed' on my way of seeing and believing, yet rather to keep absolutely open, because I love to discover and learn...and more research is coming , thank goodness...and that all really helps and encourages!

And what I will own (for my own current perspective here) is that this is absolutely a physical illness, yet there can be inevitable emotional impacts of chronic illness in terms of well-being, and we are all whole human beings, and in some cases there are genuine emotional, psychological, cognitive and social elements at play (adding extra load to the body, which then re-triggers all those elements we know so very well - all too well).

I'm intentionally taking a stance here, in the interests of discussion, whilst all along, wishing to keep open to what is 'truth'...

Would be so happy to hear what you and others think, Ian.

I'm conscious that this is an epic response. Still learning to 'chunk down' and 'pace' in a relaxed way...A genuine learning process for me...

Thanks for listening and reading

[Ian123 in reply to RockRose]

I am open to any approach that will improve my own personal quality of life, as the people best able to judge positive use of the limited energy supply, at the same time as being the ones that pay the price of failed attempts, we are the ones that should have the input we want into our care.

The NHS were using a mantra "nothing about me without me" indicating a greater involvement was desirable, though anyone who has experience of Personal Health Budgets often finds this was media spin with the medical profession reluctant, "doctor knows best" remains a major part of the relationship that attempts the best management of limited resources, both from patients and economic constraints of the care/health services.

[RockRose in reply to Ian123]

Yes, hear, hear in every sense, Ian. I feel reassured to feel in good company.

And I wish this situation were otherwise...

So the journey continues, both personally and also for others' sake.

I've been quietly 'redesigning' the system in my mind's eye...sleekening-away, so much that's cumbersome, to release some of the 'wasted' resources to that very place of 'nothing about me without me'

Ah...how to translate perceptions into reality? I wonder if there is any country in the world that does this well so far?

Or whether there are just some isolated pockets, where practitioners have 'seen the light' for themselves (as I experience some have...)

Thanks for sharing today, Ian, that helps me ground reality. I feel in true company.

Best wishes

[budgiefriend in reply to RockRose]

I'd have to agree pretty much with everything you said, and you articulated it very well.

I think the reason many of us are not attending to psychological areas of care needs is that our system IS totally separating the various aspects of our lives and seeking help/treatment for difficulties caused by stigma and social isolation, for example causes us to risk being labelled and dismissed, having the medical treatment we need for our physical illness denied to us, because they believe our symptoms are imagined or unimportant.

We can't be fully articulating the effects of the illness on our psychological and social well being without having even more detriment result. Tell a friend or colleague you are seeing a psychologist or counsellor or having treatment with an EMDR specialist....? chances are that knowledge will reinforce their belief that your illness is all in your mind. None of us need that on top of the rest.

One of my most detrimental encounters happened when a GP I'd only just met told me 'I don't believe there is any such thing as Fibromyalgia.' (I'd been diagnosed in a very thorough way by a knowledgeable GP where I used to live.

My husband was sitting next to me at the time this new GP said that. This was his cue to accuse and blame and harrass me afterward every time I had to stop and rest while walking all over London or on holiday, sleep longer, turn down a commitment or event attendance...

He would imply to others that I was lazy as well, because I had to choose between tasks I could get done in a day or a week, instead of doing them all.

Like most of you, my worst times of suffering and pain were not seen by others, and I gradually lost every friend I had at the time.

It was a nightmare.

I'll bet there are many people who have had a similar experience.

We are no longer married. I have peace and no harassment and a decent place to live without any of that going on, now. It was hard even to go through divorce when so ill, but thankfully I was still mobile and able to function most of the time. My physical health has deteriorated a lot in the years since then.

So much harm has been done. We are not yet at the point in medical perceptions of this illness, where anything can be joined up for us and seen in the correct way by professionals and lay people we encounter.

I would be so grateful for the various therapies you have access to either through insurance, private financial resources, or some other means. For many of us who are alone and poor, there is no chance to have massage, decent ongoing acupuncture, and the like. I used to get many of those when I had the ability to work and could pay for it. Now it's simply not a possibility.

It took months of begging my GP for better medications and trying at least a dozen that did not work, before she finally referred me to the local pain clinic. I was still able to get there by taxi. All they did was prescribe Pregabalin, which has gradually been increased to the highest dose.

When that did not help a lot, I got 8 sessions of acupuncture from a skilled consultant acupuncturist in the same pain clinic. But the NHS funding only allowed for treatments to be spaced out once every 2-4 weeks for 20 or 30 minutes each. Also, he practiced what he called 'Western acupuncture' which was nowhere near the level of help and attention I had previously got from an excellent Chinese doctor I paid privately who had taught it in Chinese medical schools and been brought to the UK by a therapist to work in her clinic.

The difference was that the Chinese doctor gave me more time, used more needles, applied them more skillfully and intentionally, used some massage techniques along with it, and saw me twice a week. I even negotiated a trade of my skills to teach someone in his family in exchange for part of the treatment costs. That's a good example of the way proper care arrangements should work.

The NHS is wasting money offering this type of 'alternative' medicine to patients in need of ongoing and more intensive, focused care solutions.

I would have gladly donated the money they wasted for those 8 sessions to the Invest in ME Charity or used it for 16 or more sessions with a good massage therapist, who would have charged a small fraction of the consultant's fees paid by the NHS. But those options were not available. (sigh)

However, some people get even less than I and they may be in worse physical condition. We have to hang together. I appreciate the input of everyone here very much!

[budgiefriend in reply to Ian123]

Wow! Do you have a link for that speech by the leader in the Scottish Parliament?

[Ian123 in reply to budgiefriend]

After [51] in this letter by Professor Hooper is the best I can find

maartens.home.xs4all.nl/log...

[budgiefriend in reply to Ian123]

Thanks for the link. Looks like some heavy but good reading.

[RockRose in reply to budgiefriend]

Yes... (would take me a few kalpas !)

and from a 1 second glimpse, I feel its heartening , or rather, validating... in terms of giving credibility... (without 'denying' other insights that we could also discuss, e.g. value or otherwise of CBT).

e.g. From 'Magical Medicine':

"“Today there is evidence of the biological underpinnings. And there’s evidence that the patients with this

illness experience a level of disability that’s equal to that of patients with late‐stage AIDS, patients

undergoing chemotherapy, patients with multiple sclerosis.

“And that has certainly given it a level of credibility that should be easily understood."

Just for today...

....I rest this case !

[RockRose in reply to Ian123]

PS I discover in myself a new way of gliding over words, hardly reading them at all, especially when deeply forested and dense... yet allowing a simple-relaxed graze over Magical Medicine

...I came across this rather more 'sinister' section...(p 44)

I'll let it speak for itself...quietly digesting now. George Orwell, where are you?

"The MRC’s secret files on ME/CFS

It is unknown whether or not the refusal of the MRC to investigate David Sampson’s legitimate complaint

has anything to do with the fact that the MRC has a secret file on ME that contains records and

correspondence since at least 1988 which, co‐incidentally, is about the time that Simon Wessely began to

deny the existence of ME.

The file is held in the UK Government National Archives at Kew (formerly known

as the Public Record Office) and was understood to be closed until 2023, but this closed period has been

extended until 2071"

[budgiefriend in reply to RockRose]

I read a blog post on the continued efforts to get those files under FOI act. Seems they are claiming that they can't release them because of privacy laws concerning people named. However, I think some have recently been released. Will do a search. may have been Stonebird blog.

[budgiefriend in reply to RockRose]

Found the blog... Valerie Eliot Smith. She is an attorney as well as a sufferer. She used her skills a lot on behalf of ME cause.

valerieeliotsmith.com/2015/...

[Ian123 in reply to budgiefriend]

I had read of the MRC files a few years ago

meactionuk.org.uk/The-MRC-s...

when the contents were a security concern.

[RockRose in reply to budgiefriend]

Thanks BudgieFriend, and very enlightening. From a quick skim, seems that much more of the material is out in the open. For myself, I feel upto speed on the realities of the huge power/influence of the psychosocial model proponents and how this has impacted research and treatments to date. (And I speak as someone who believes in genuine understanding and research, allowing for all factors that would help make a real difference to any of us living with this condition day to day.

Let's trust that the new green shoots of research and recognition into the biomarkers starts bearing fruit and getting heard...

I admire and respect what Valerie has done and also agree when she says:

"My opinion is that it is more useful for me to focus on establishing what other routes might be pursued to achieve proper recognition and treatment for ME/CFS patients – possibly by making use of what is already available in the files – rather than chasing up the relatively small amount which remains closed."

Brava Valerie !

[Halflife]

Beth Unger leading the CDC Multi-site Clinical Study is on record as not holding with PEM rating as the defining feature. The IOM found all the evidence for the committee putting it front and center unanimously, figure they did not count Dr Unger's opinion so high when she presented stage 1 research from the CDC.

Clinicians having treatments for what every one knows is real though malaise is another flaky name clear as fatigue in hiding a truth is my hope for this research Cook/Light/Broderick are following.

[Ian123 in reply to Halflife]

I often wonder how "flaky" descriptions have survived against the scientific research, can it be explained as people believing what they want to and disregarding the scientific evidence, that does not support a political agenda.

[budgiefriend in reply to Ian123]

In a word YES

[budgiefriend]

I really appreciate that being included here.

I also have pronounced P.E.N.E (P.E.M.) after taking a bath, which I can only manage once a week at present (disgusting to someone used to showering or bathing every day in the tub) I can't stand long enough to shower... too wobbly and too prone to falling or fainting due to orthostatic intolerance. I'm between a rock and a hard place as far as P.E.M. is considered as the warm water is very therapeutic for my muscle pain from Fibromyalgia. I should be soaking with Epsom salts in a warm bath several times a week, maybe, but getting in and out of the tub uses too much energy and puts me into PEM for the rest of the week.

My dilemma for ME diagnosis, is that I am severely affected and have comorbid diagnosis of fibromyalgia. The NICE Guidelines flowchart thing for treatment of suspected ME instructs the GP to send all severely affected patients immediately from primary care to a consultant.

As far as I can see, there are no consultants or CFS/ME clinics in the NHS that do not view this as a psychosomatic illness due to wrong illness beliefs and all the rest. I do not wish to see any doctor who ignores biomedical research evidence in favour of these theories by psychiatrists. What to do?

Very disheartening that the ME Assoc. website lists all the specialist centres around the country and they are all ignoring these research findings, persisting with the CBT/GET and similar and talking about psychological factors and deconditioning and such.

From this research, it is clear that any aerobic activity is bad for PWME. My understanding is that we need anaerobic exercise in very small increments, with periods of rest built in... like one time doing a small stretch or roll, and then rest, then another, for example, in a very carefully managed slow building programme prescribed and monitored by someone with adequate understanding of how this works for us.

And only undertaking to increase activity AFTER determining our baseline and pacing and getting to a point where we can take a bit of additional exercise without severe flareups of symptoms.

I wonder if such properly educated professionals and treatments are ever going to be offered to us.

I'm not getting anywhere with finding solutions. Seems that all advocacy services have been cut back and I've been referred to a church run charity which is not at all going to be helpful with finding me medical help. I've been referred to them before. They do befriending, work with the indigent, etc. Complete waste of time for me. (sigh)

[RockRose in reply to budgiefriend]

Hello budgiefriend, I (unusually for me) woke up in the middle of the night and your reply speaks to me (...also being a person who is naturally hygienic...often resorting to wet wipes at the moment)...I don't experience orthostaric intolerance, that said, I'm pretty much bed bound.

I wish to share my current experience. I was attempting a phased return to work 3 years ago (and reached 2-8 hours a week before relapsing), when occupational health got pretty certain of the ME/CFS diagnosis and wondered why I hadn't been referred-on to a specialist...

Long story short, I got referred to the nearest CFS clinic. They took a full set of bloods and found 2 things needing treatment. Which got sorted, thankfully. So they started off with the physical. Then I saw an OT who shared the concepts of pacing, prioritising and achieving a sustainable baseline (before very, very gradually extending daily activity levels). However, in practice, I got to a max 3 hours a day, and currently around 1 hour a day. I also saw a physio who set me the goal of 5 mins stretches and very gentle exercises for 5 days a week. A year later, I'm managing that once a week, with between 1-3 days payback, yet I enjoy doing it and I'm sure if I didn't I'd be even more creaky !

The physio also wanted to refer me to a pain clinic, but the ironyis that I'm (still) too unwell to go, as the hospital is 50 mins bus ride away and you have to reliably commit to sustaining a 2 hour session for 8 consecutive weeks ! (I'm not even managing to cook or empty my bins etc).

Fast forward a year...and I've just applied for PIPs and a health and social care assessment...(awaiting outcomes) and being prescribed some (actually fairly effective) painkillers, which takes the edge off the pain.

When I was a bit more mobile until 6 months ago, I was also having self-funded EMDR sessions (for complex background trauma), which was important in my personal case.

But still getting repeated flu type symptoms and actual viruses etc. so thinking of going back to the GP and asking about anti-viral (like the Dr Lerner study suggests may help any of us with background EBV).

So, in my experience, the CFS clinic and its practitioners was fairly reasonable and far more sensitive than might appear from reading NICE guidelines, though I suppose internal NHS clinic funding might rely on the 'case' presented to appear to 'adhere' to that? (Not an area I have personal experience in, yet could imagine there's a degree of lobbying and influencing Internally that relies on teams backing-up the received 'wisdom' and evidence-based research of the day?

My apologies for this epic. I just felt inspired to share - thanks for reading - if you make it this far down.

Best wishes

Rock Rose

[budgiefriend in reply to RockRose]

Thanks so much. I agree that it would depend on the teams and the doctor who runs the clinic. In my area, I know who runs the clinics as well as the local Rheumatology dept. Have read how he treats people and what he thinks about this illness and Fibromyalgia. The further away from him I can stay the better. I'd either wind up with mental health diagnosis or somewhere even worse as a result of losing my temper. I am not a violent person, but his attitude is appalling and not at all based on science.

[budgiefriend in reply to RockRose]

I'm really glad you got the EMDR you needed. I also needed it about 10 years ago, but could not afford it. I was sent to a psychologist at a nearby hospital, who I later learned seems to only really treat soldiers with PTSD. She shouted at me and re-traumatised me so much that my regular counsellor said we had regressed several months at least in the therapy I was having for the trauma and loss I'd experienced.

It was hard at the time to separate my PTSD symptoms from my Fibromyalgia symptoms. I later started to learn about ME, and realised that much of what I had assumed was caused by PTSD was actually the fibromyalgia or probable ME.

I'm mentally healthy and strong now, having sort of made my way through other means of resolving the PTSD issues and grieving over a few years. The symptoms I'd confused for mental health ones remain and have increased, without any associated traumatic memories.

So much for co-morbid conditions. This is one reason why I was glad that the IOM recommended that co-morbid conditions be addressed, examined and accounted for, instead of assuming that they were the cause of suspected ME and denying an ME diagnosis.

If only the NHS could reach this point, we would be a long way further ahead. I am sure many people have some sort of trauma and if their medical records show it or any even brief history of mental health care/counselling, doctors assume that is the source of their 'psychological' ME symptoms. Very poor logic skills!

I think GP training should include some robust courses in logic and reasoning. Those skills are needed when contemplating diagnoses.

[Ian123 in reply to budgiefriend]

Finding the coping strategies that get the most from broken bodies through trial and error as we support each other as best we are able, while we wait for medical sciences progress. Given the low starting point of care provided the worst that can happen is no change, anything else can only improve the quality of life of those this illness has blighted.

[budgiefriend in reply to Ian123]

YES! Thanks to all of you... a million thanks!

[SophiaG]

Lots of this goes over my head but I am learning so much that is helping thank you.

[Ian123 in reply to SophiaG]

With any luck we can all learn from each other SophiaG the technical research goes along with the support and experience we can share.

[RockRose]

I'm very touched and moved by both your replies, both rationally and emotionally, Budgiefriend. I can absolutely understand why you would wish to steer away from such a doctor (in the clinic). I'd like to respond some more in a coupe of days, if you'll bear with me.

I stand with you in holding to what actually supports and helps.

Yes, this would also include everything you wisely allude to in terms of diagnosis and rational thinking.

Thanks for sharing on both counts, which I greatly appreciate, feeling both for us here as individuals and for the situation at large.

[slowmotion]

Receptor talk lost in my cotton wool bud brain I can so relate on payback after the smallest things. Stressing on what I am doing can wipe me out I can see you guys so get that feeling I am split between happy at understanding with sad the only way you know is the same bad days.

[Ian123 in reply to slowmotion]

Having scientists understand how you feel is some hope that one day there will be better treatment for more good days than bad ones.

[Arianne]

Post-Exertional Debility solvecfs.org/guest-post-dr-...

Dr. Larry Baldwin is a licensed physician (B.A. Johns Hopkins Univ., M.D. U of MN- Minneapolis, general surgery residency Marshfield Clinic- St. Joseph’s Hospital, Marshfield, WI) who practiced general and vascular surgery in Hibbing, MN until myalgic encephalomyelitis (ME) suddenly ended his career with a severe, acute viral illness onset twenty years ago.

In April, Dr. Baldwin worked with our Scientific Director, Suzanne D. Vernon, PhD to provide comment on post-exertional debility to the Institute of Medicine Committee on Diagnostic Criteria for ME/CFS. The Association has been working with Dr. Larry Baldwin, tapping into his medical expertise and experience as a patient.

We are happy to provide his insights here as a guest blog post, as he talks about post-exertional malaise (PEM) as Post-Exertional Debility (PED).

Post-Exertional Debility is an Important Symptom during Myalgic Encephalomyelitis

By Larry Baldwin, M.D.

I have pursued a variety of research interests such as: synthesis of an organic molecule designed to release nitrogen gas as a preservative, health care delivery issues at the Johns Hopkins Hospital Pediatrics ER and at the rural medical clinic in Onamia, MN, health care policy concerning the competitive environment for the teaching hospitals in the Twin Cities Metro area, and the early use of thrombolytics in acute lower limb venous occlusion to prevent chronic venous disease. So I was interested in using my research observation skills to study my own ME/CFS symptoms and have kept a record through the years.

From this record I see a pattern of symptoms, which I call post-exertional debility (PED), that occur following physical or cognitive exertion. This pattern is specific and vastly different from any post-exertional experience I had as an athlete, surgery resident or while practicing surgery. While training for marathons I was able to run through the “wall” that many runners experience. Now I experience a similar wall after minimal exertion and have not been able to train through or push through this wall.

This pattern of post-exertional symptoms has been very consistent while experiencing them almost daily during 20 years of disease. The onset and peak severity of symptoms is characteristically delayed following exertion. The symptom severity increases as the workload intensity and duration increases. Some symptoms appear only as the workload increases. This symptom pattern is different from that during an acute viral infection.

The following table shows how symptom severity increases and symptoms appear as workload increases. Workload may be physical or cognitive. The lowest level of workload will elicit migraine pain, fatigue sensation, cognate impairment and sleep onset prolongation. As the workload increases these symptoms increase in severity. At the next higher level of workload sleep abnormalities worsen with nocturnal myoclonus beginning and then worsening as workload increases. This has been severe enough, on occasion, to cause me to fall out of bed. Mild workload will not cause noticeable neutrally mediated hypotension, but at higher levels it occurs typically after a few hours of sleep at night. As the workload increases the hypotension is more severe, lasts longer and spreads into the daytime hours with greater interventions needed to treat it.

[Ian123 in reply to Arianne]

Debility is better than malaise though only slightly in passing on in simple terms the utter exhaustion we understand. I think having a well qualified advocate dissuades those that would challenge the bio medical origins with their illness beliefs hypothesis.