Time for the Big Talk. How's the CAA doing?

[Mithriel]

As I have said before, but I think it is important enough to emphasize, forums are giving a voice to many of the ME/CFS sufferers who were not able to participate before.

We don't need to blame the CAA or the doctors who are trying to help by promoting exercise, they may never have seen the patients who are most affected. But we are here now. We can tell them what made us so disabled, so sick.

If they do not listen now, THEN we have a right to hold them accountable.

Mithriel

 

[Roy S]

Mithriel,

I've had ME/CFS for 40 years. It's good to see another long term survivor.:Retro smile:

I was also involved in early advocacy and the CAA. The really frustrating thing is that they have heard all this for a very long time.

 

[oerganix]

My take is that yours is incorrect. And mine comes from actually being one of those severely disabled patients.

The physical ramifications of exerting SUCH that you BECOME immobilized are FAR MORE significant.

About the intense concerns about deconditioning expressed by you and by the CAA and certain clinicians... others have already commented accurately on this so I will just add:
Neither my father, who was a doctor (a clinical pathologist), nor two of the best known CFS specialists in New York City, nor any of the other CFS specialists I saw or spoke with, nor Fred Friedberg (@'96) ever lectured me on the dangers of deconditioning, nor the importance of gradually increasing activity, nor even of mild 'stretching'. Those CFS specialists have each seen at least as many ME/CFS patients as Dr. Bateman or Dr. Lapp. They knew deconditioning occurs, but were not concerned enough about it to try to counter it. Perhaps they thought it was not dangerous, or perhaps they thought the countermeasures would be more dangerous. Either way, if we must cite clinical sources in this matter, those were mine.

Cort, you just heard, yet AGAIN, articulate statements from a bunch of patients who have experienced the exact opposite of what you stated above and of a central tenet of the CAA's recommendations on exercise. You can't rationally conclude that these patients are a coincidental cluster of freakish cases. On the contrary, they are clearly representative of far greater numbers. Why would the CAA choose to ignore so many patients? This denial of reality must stop now.

None so blind as s/he who WILL not see; none so deaf as s/he WILL not see.

Mithriel, I agree in principle with what you are saying, BUT many doctors, the CAA and Cort have been told many times and still just don't hear us. This can be expected of people who don't have, or know anyone who has ME/CFS, but it's extremely hurtful to be coming from those who ought to be listening.

It's that denial of reality that is so crazy making.

 

[MEKoan]

The crux:

The physical ramifications of exerting SUCH that you BECOME immobilized are FAR MORE significant.

I don't know why this is so hard to understand. The consequence of overuse is muscle failure and systemic illness. The degree to which we are affected is different for each of us, and is sometimes variable throughout the course of the illness, but the mechanism appears to be the same.

What am I missing?

 

[Jerry S]

As I have said before, but I think it is important enough to emphasize, forums are giving a voice to many of the ME?CFS sufferers who were not able to participate before.

We don't need to blame the CAA or the doctors who are trying to help by promoting exercise, they may never have seen the patients who are most affected. But we are here now. We can tell them what made us so disabled, so sick.

If they do not listen now, THEN we have a right to hold them accountable.

Mithriel

Hear, hear!

 

[starryeyes]

Mithriel,

I've had ME/CFS for 40 years. It's good to see another long term survivor.:Retro smile:

I was also involved in early advocacy and the CAA. The really frustrating thing is that they have heard all this for a very long time.

Right. So what do you or anyone else here suggest we can do about it?

I think of how we are all suffering and many of us were made worse by exercising when our bodies told us not to and it makes me feel upset and sad but then I think of the children with ME/CFS who are being forced or coerced to do CBT/GET programs and I become enraged.

The CAA has been wilfully ignoring all of the patient testimonies at the CFSAC conferences, all of the input from patients on their website and through the mail, all of the videos, and even the specialists who agree with us for decades now.

The CAA may be listening but they clearly have an agenda for us and it is a very harmful one.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[_Kim_]

I have silently watched as some of our sickest members have provided testimonials about the firsthand harm that CBT/GET has caused only to be countered by Cort's responses. His lack of acceptance of the inherent dangers of exercise and lack of compassion to our members who have spoken out has left me dumbfounded.

It breaks my heart to read the enormous efforts put forth by these members in an effort to convince Cort that their experience contradicts what is endorsed by the CAA and by some of the doctors who treat people with ME/CFS.

Not long ago, on the Medic thread, I posted this

Cognitive Behavioral Therapy and Graded Exercise Therapy
and you cannot speak of one without addressing the other

!!! Are Dangerous !!!

There are grave risks that it will worsen symptoms for PWC
There are no means to predict who it will harm
It could be you
It could be me

For a mere 10-20% chance of improvement
You risk 100% decline

And Cort replied

OK I got it. I guess I'm more familiar with the Dr. Klimas, Dr. Jason form of CBT. Big warnings should be placed alongside CBT overviews that CBT practitioners that try to push patients through their symptoms are dangerous.

But his recent posts about deconditioning on this thread tell me that no, Cort didn't ''get it".

Cort, can you explain to our sickest members why you insist on negating their experience? Do you believe that these members are perpetuating "rackets"? As someone who has had extensive training (8 yrs) in est/ Landmark Forum, you would know the language and what I mean, but for those less familiar with the program, here is a summary that I found to describe that term adequately:

The main activity of the Landmark is to make--not urge--participants to apologize to the people around them for the "rackets" they have dumped on them. A racket is a state of being, Sophie explained, a story one tells oneself where one is a victim in a permanent state of complaint. We are constantly affixing "stories" to events rather than seeing the separation between "event" and "interpretation," and these stories are usually based in our self-righteous feeling of being wronged.

If you believe our members to be perpetuating "rackets", it would be kind of you to say so and not to waste their very precious energy and resources engaging in a debate that they can never win.

 

[MEKoan]

Hey Cort,

I just read your bio and I now see where you're coming from. You have had some experiences and hold some beliefs that inform your current positions, as do we all. I agree with Kim that it is so much easier to understand your point of view when one knows... well, your point of view. You are entitled to a point of view, as are we all, and I'm sure many people would have a much, much easier time getting yours if they read your history.

I think we bring on all sorts of confusion when we try to hold conflicting views. I applaud your attempts to have an open mind in all things but few of us actually hold all things equally valid and you do believe some things to be true. I believe some things to be true, too. We really can't seem to help that. We have a point of view.

I think it would benefit your writing if you wrote from your genuinely held POV as it has been informed by your life. You are writing opinion pieces by virtue of the fact that you include any opinion you may have. Why not simply write your heartfelt opinion. I'm sure it is actually more subtly nuanced than what we sometimes come away with when you do not write from your truth.

I don't share many of your opinions but I will defend your right to them. What I can't easily do is defend you when you purport to speak from a place without bias but do not do so. It is devilishly difficult to speak without bias when speaking about something which effects one personally. And, unspoken bias can work its way into our words in a more insidious and damaging fashion than our plain spoken biases ever do.

Thanks, Kim, for this opportunity to understand Cort a little bit better.

Peace out,
Koan

 

[Orla]

Kim posted re Landmark:

The main activity of the Landmark is to make--not urge--participants to apologize to the people around them for the "rackets" they have dumped on them. A racket is a state of being, Sophie explained, a story one tells oneself where one is a victim in a permanent state of complaint. We are constantly affixing "stories" to events rather than seeing the separation between "event" and "interpretation," and these stories are usually based in our self-righteous feeling of being wronged.

I find that totally shocking. It would discourage victims from seeking justice, for example, or discourage people from organising to right wrongs. Sometimes people need to complain and need for their story to be heard and acknowledged. If this doesn't happen a lot of the suffering will continue.

Orla

 

[justinreilly]

The Deconditioning Scam

The obsession of some doctors with 'deconditioning' and exercise is just a con job, like the Oxford definition and 'abnormal illness behavior.'

The only plausible explanations to me for why doctors advise exercise is either:

(1) they are very ignorant about ME (as the vast majority of doctors are) and don't know that PEM is a hallmark of ME or they are mislead by the way ME is discussed including the term "Malaise" (I strongly prefer 'Morbidity') into thinking that it is just feeling a bit bad and sore when one has spent too many hours at the gym and that it does not worsen the disease;

(2) they are con artists like Wessely and White, etc. trying to make people think we are just malingerers or mentally ill; or

(3) they know better (a very small percentage of doctors who I would consider 'on our side') but on some level can't see that the emperor has no clothes even though his wiener is staring them in the face. To some extent even though they are on our side, perhaps under their awareness, they believe that Post-Exertional Morbidity does not exist or that we patients are overblowing the problem. To me the probability that the good guys who know better have, on some level, been taken in, is even more troubling than the outright scams run by Wessely and co-conspirators.

I will keep an open mind to practitioners who advocate activity who are very knowledgeable and/or have ME, as someone said Staci Stevens does, but I think we can be almost sure, based on the current evidence, that this will be a dead end of iatrogenic morbidity.

Group (2), the con artists, are generally more savvy than they used to be and avoid coming right out saying we are lazy and crazy (although this certainly still happens), but labor tirelessly to broadcast this message to other doctors in barely disguised code. They do so by feigning concern at the non-existent problem of deconditioning- to imply (a) that the disease and PEM are so trivial that deconditioning is a bigger problem, (b) that we don't have a physical disease, just laziness and misconceptions and 'amplification' of our own symptoms and (c) that we are so lazy and crazy we are the sort of people who you have to nag into taking basic care of themselves like a person with extreme Major Depressive Disorder who is essentially committing slow suicide and showing contempt for himself and everyone trying to help him through passive-aggressive self-neglect.

On a personal note, I have been surprised to see how slowly my muscles have atrophied. They were never too big since I have an endomorphic (thin/ not muscled) natural body type and had done a bit more aerobic exercise and sports than muscle gaining. But I was very fit. Even now, seven years after last setting foot inside a gym I am (thin but) fitter looking than the average person (as you can see in my avatar photo : )). Deconditioning is not an issue for me.

Orla the Oracle said that even for bed-bound patients deconditioning is not a real problem. "Deconditioning" is a scam. Cort, you have been brainwashed!

 

[Orla]

Some excellent points by people. Just to comment on a few.

Justin
All the times I have pushed myself physically because I told myself to ignore my limits or someone else told me I 'had' to push through it or I simply missed exercising, it has definitely made me worse. It takes a lot of discipline for me not to exercise as it used to be one of my biggest joys in life. But I'm glad I can muster that discipline because exercise makes me much sicker. I think this story for all of us is similar.

Ditto for me. I used to be good at disciplining myself to do things, now I have to discipline myself not to do things. I found this a really odd and difficult transition at first.

I am really into exercise (in spite of how I might be coming across here). I used to exercise a lot before becoming sick and loved it (and I still hope to be able to exercise again someday). The abnormal reaction to exercise is the most distinctive and characteristic feature of this illness.

Much as I would love to exercise, and would love if exercise improved us, I don't think there is any evidence that exercise improves ME/CFS. Many cannot do exercise, or should be limiting how much they do. Unfortunately it can be easy to overdo it because of the delayed bad reaction many people get.

I think a good rule of thumb is do what you can but no more. (By, what you can, I mean that which doesn't give you pay-back afterwards).

Justin...From now on, I am only going to listen to my body from and what I know has been proven and what makes sense based on what I know and feel- nothing else. I am going to stand up for my right and the right of all other ME patients never to be told to exercise.

:victory: :victory: :victory: Exercise is not an ME/CFS treatment (or not a sane one) so I think on the whole that it needs to stop being treated as if it is. If people can exercise then it is probably ok to do it ok once they don't get flare-ups from it (we don't know for sure exactly what is safe, and most patients are not being monitored to check the effects of exercise biomedically).

But I think we need to get away from this idea that exercise is treatment, and that exercise will rid us of our disability. The pushing of exercise helps to propagate the notion that or we are all just lazy so and so's who sit around all day feeling sorry for ourselves, and we just need to do more. I know there are other potential long-term problems with lack of exercise, but overdoing it with activity is probably going to cause worse problems, and lead to less activity in the long-run.

I realise that some patients might find some stretches or something useful for pain or other problems, but they should still pace these activities, and they should not be forced into anything.

Justin

If the patient needs to exercise, the patient will know; her body will tell her. Therefore, telling any patient to exercise is almost always harmful and never more helpful than noise obscuring the right message- the one from the patient's own body. Enough is enough. As someone on the DSM 5 forum said- "Zero tolerance for Bullsh!t!"

Yes that is my feeling on the issue also.

Orla

 

[Orla]

Mithriel

I don't think we become deconditioned or need exercises because we can do almost any movement what we can't do is repeat movements. That is one of the problems with exercise programs, they all want you to do so many repetitions and that is where the illness limits us. I don't know if any of the doctors realise that.

Good point Mithriel. It is the repetitive exercises that are such a problem for us, and also what physios will be used to suggesting. I remember reading something by Dr Anne McIntyre (in the UK) and she mentioned this problem with repetitive exercises/activities (she has ME/CFS herself which is probably why she understands it).

Robyn
So if exercise is the key then why don't all so called de-conditioned people have CFS of Fibro?

Exactly, people don't get ME/CFS from deconditioning. There are not outbreaks amoungst deconditioned patients beause they are deconditioned. People normally get ME/CFS after infection, vaccinations and so on. It is normally people who are active and leading normal lives who get it. Most people are sudden onset, so they go from being up and about to suddenly sick. This does not fit the deconditioning theory at all.

Funnily enough when there was an outbreak in the Royal Free Hospital in the UK, hardly any patients got it, but very many staff did.

Robyn
In my expert opinion (since I have this condition) I have found that excercise has made no difference what so ever and has made me feel worse every single time I have tried it

Yes. I used to be able to walk 20-30 minutes a day a few times a week (this was ages ago when i went through a good patch, I thought I was getting better :worried and it made absolutely no difference to any of my symptoms (except I do wonder whether it made me worse in the long-run, as I got worse again, but I cannot be sure).

Orla

 

[oerganix]

Kim posted re Landmark:
The main activity of the Landmark is to make--not urge--participants to apologize to the people around them for the "rackets" they have dumped on them. A racket is a state of being, Sophie explained, a story one tells oneself where one is a victim in a permanent state of complaint. We are constantly affixing "stories" to events rather than seeing the separation between "event" and "interpretation," and these stories are usually based in our self-righteous feeling of being wronged.


I find that totally shocking. It would discourage victims from seeking justice, for example, or discourage people from organising to right wrongs. Sometimes people need to complain and need for their story to be heard and acknowledged. If this doesn't happen a lot of the suffering will continue.

Orla

I agree. This Landmark philosophy sounds like just another fanatical, intolerant religion. It is its own racket, in black or white.

Whether one believes that illness is a punishment from god, your bad karma coming back to haunt you, fate, destiny, chance, etc., any of those "inevitables", the more moderate factions of every religion or philosophy still teach us to have compassion for other people's suffering. And if we can have compassion for others, we can have compassion for ourselves. In fact, if we have no compassion for ourselves, how are we to have compassion for others?

Acknowledging suffering, in all its many degrees, is the compassionate thing to do, IMO. It is also my opinion, based on the person I know myself to be, that receiving compassion from others does not mire me in self-pity, does not encourage me to remain sick. I, and others, have been wronged in many ways, for what ever the reason. (ieefrauded of research, denied medical treatment, denied disability payments, miscast as liars, malingerers and crazies...) Denying that reality doesn't change it, and in the case of ME/CFS, only perpetuates the wronging. As Orla says, how do you right a wrong if you can't even acknowledge that it exists? To call the acknowledgement of wrongs a "racket" is some sort of manipulation toward self-hate, for those who have been wronged.

I also know the value of accepting what you can't change, but like most of us here, I rarely can be sure just what I can change and what I can't. I have learned from that, that "authorities" and "experts" can't be sure either, so I have to go by my own observations and experiences.

If this illness has taught me anything, it is that my personal reality is not obvious to anyone who hasn't experienced it. Any that tells me that no one else's reality can be totally understood by me, not even someone else who also has this illness. So, I choose to accept their reality as they reveal it to me, to the extent I can.

So, it comes down to that: a choice. Do I set myself up in judgement that other people's realities are just a "racket" or do I accept them, to the degree I can, as they claim to be? This doesn't mean I can't notice that some people play the game of being a victim, or the polar opposite, of being the tough guy. As Orla has mentioned before, we need to practice discernment, not blanket condemnation.

The nature of this illness has kept many of us in isolation. One of the best things a forum like this does is provide a place for sufferers to connect with others who have had, or are having, the same experiences...the ones our families, friends, doctors and others "don't get". After we have been invalidated for so long, in so many ways, it's very affirming to have a place where we can share those experiences that others have used to invalidate us, and to not be invalidated again by sharing them here.

Therefore, it's very hurtful when "our" advocacy organization, or "our" forum creator seem to be denying our personal realities and, thus, seem to be allying themselves with our tormentors. If it's a philosophical difference behind this seeming disconnect, then I think we deserve to know just what that philosophy is.

 

[jackie]

I'm in day 5 of barely being able to walk. I'm using two canes I found in a closet - and can slowly shuffle a limited distance (bathroom-bedroom-kitchen)...this happened so apruptly I didn't even have time to get a wheelchair. I have extreme muscle spasticity in both legs and feet. It's incredibly painful...and incredibly frustrating. I had to cancel a neurology appt...because I couldn't walk to the car to be driven there.

Did I stand in the shower too long? Did I try to lift a clothes basket a bit too heavy? Most likely it was climbing a staircase to retrieve something...and then THIS. We never can judge what will trigger...and we can't determine how long it will last OR if we have gone too far and this is the way it will always be.

It's happened before - and it will surely happen again. What WON'T happen again is me climbing a simple staircase. If that avoidance makes me phobic....so be it - I'm phobic!

(btw...as an example, I walked two miles EVERY MORNING along the ocean for many YEARS until I got sick. Fed/cleaned/mucked out the stable, lifted hay bales for my horses, sculpted, stood for hours on end at an easel, routinely carried 25# blocks of clay around my studio - among many other activities. I WAS one strong woman!)

j

 

[oerganix]

I'm in day 5 of barely being able to walk. I'm using two canes I found in a closet - and can slowly shuffle a limited distance (bathroom-bedroom-kitchen)...this happened so apruptly I didn't even have time to get a wheelchair. I have extreme muscle spasticity in both legs and feet. It's incredibly painful...and incredibly frustrating. I had to cancel a neurology appt...because I couldn't walk to the car to be driven there.

Did I stand in the shower too long? Did I try to lift a clothes basket a bit too heavy? Most likely it was climbing a staircase to retrieve something...and then THIS. We never can judge what will trigger...and we can't determine how long it will last OR if we have gone too far and this is the way it will always be.

It's happened before - and it will surely happen again. What WON'T happen again is me climbing a simple staircase. If that avoidance makes me phobic....so be it - I'm phobic!

(btw...as an example, I walked two miles EVERY MORNING along the ocean for many YEARS until I got sick. Fed/cleaned/mucked out the stable, lifted hay bales for my horses, sculpted, stood for hours on end at an easel, routinely carried 25# blocks of clay around my studio - among many other activities. I WAS one strong woman!)

j

So sorry to hear your situation! Hope it doesn't last too long.

I, too, used to exercise just for the fun of it. At the time I first got sick I was jogging an hour on alternate weekdays after work, biking 12 miles the alternate days, backpacking and hiking in the California Redwoods on weekends, dancing like crazy for 4-5 hours most Saturday nights and being very physical every day. I loved that runner's high. If I should ever get back the capacity, I'd be a dancing fool once again. I tried to learn the Latin dances here in Nicaragua and I couldn't even last a minute!

Isn't it funny that the "its all in your head" bunch will say we are deconditioned and that causes all our symptoms, then when you tell them about your former fitness and dedication to exercise, they'll turn right around and tell you that "over doing it" is why you got sick! Damned if you did, and damned if you didn't. Wrong no matter what.

That's what's wrong with GET/CBT. It starts from the premise that the ME/CFS suffer is wrong, wrong, wrong, no matter what the facts are.

 

[Orla]

Hi Justin,

Just one small nit-picking point

Orla the Oracle said that even for bed-bound patients deconditioning is not a real problem. "Deconditioning" is a scam. Cort, you have been brainwashed!

Problems from being bedbound can occur in the really severe long-term bed bound patients (e.g. osteoporisis - though Vitamin D deficiency could also be a problem here), but exercise is not necessarily the answer as these patients probaby won't be able to much/any anyway, they are probably already pushing it on their activity ceiling, and it is often exercise what caused the severity of the problem in the first place.

But I agee that the deconditioning theory of ME/CFS is a scam. The vast majority of patients are not deconditioned in any meaningful sense of the term, and yet they are still sick. Deconditioning, even where it might exist, is not THE problem for patients.


Orla (who is not a doctor, just going on observation and reading some of the literature, and not an oracle either though thanks for compliment even if I am a bit embarrased )

 

[oerganix]

Hey Cort,

I just read your bio and I now see where you're coming from. You have had some experiences and hold some beliefs that inform your current positions, as do we all. I agree with Kim that it is so much easier to understand your point of view when one knows... well, your point of view. You are entitled to a point of view, as are we all, and I'm sure many people would have a much, much easier time getting yours if they read your history.

I think we bring on all sorts of confusion when we try to hold conflicting views. I applaud your attempts to have an open mind in all things but few of us actually hold all things equally valid and you do believe some things to be true. I believe some things to be true, too. We really can't seem to help that. We have a point of view.

I think it would benefit your writing if you wrote from your genuinely held POV as it has been informed by your life. You are writing opinion pieces by virtue of the fact that you include any opinion you may have. Why not simply write your heartfelt opinion. I'm sure it is actually more subtly nuanced than what we sometimes come away with when you do not write from your truth.

I don't share many of your opinions but I will defend your right to them. What I can't easily do is defend you when you purport to speak from a place without bias but do not do so. It is devilishly difficult to speak without bias when speaking about something which effects one personally. And, unspoken bias can work its way into our words in a more insidious and damaging fashion than our plain spoken biases ever do.

Thanks, Kim, for this opportunity to understand Cort a little bit better.

Peace out,
Koan

So very well said, Koan. Our personal experiences, and how we respond/react to them, do shape our world views and ,yes, our biases.

Cort, I actually think you and I could agree on a lot more than it appears on the surface. I have to cop to the truth that I respond more to your posts, and others', when I disagree, and tend to sail on by when I agree. I think of you as a great guy, with whom I have a few very important differences of opinion that may always be there, or maybe not, but overall we're on the "same side". At least I hope so...

I will, in future, try to remember that you are speaking your truth, even as you speak as if it were the truth. If I haven't already made it clear, when I post I am speaking my truth.

 

[Robin]

But I agee that the deconditioning theory of ME/CFS is a scam. The vast majority of patients are not deconditioned in any meaningful sense of the term, and yet they are still sick. Dedconditioning, even where it might exist, is not THE problem for patients.

Right. Deconditioning doesn't cause the symptom pattern seen in ME/CFS, or else anyone who was recovering from surgery, of the flu, or if you're an astronaut in zero gravity, would be very very ill.

Since we're discussing deconditioning, maybe we should talk about what it means. Our bodies adapt to our activity levels. So, people who are very physical like laborers and athletes are conditioned what they do every day: they have more muscle and bone mass, larger lung capacity, and more efficient cardiac function. Deconditioning is a process, not a state of being. So, if they switch to a desk job their bodies don't need these things and they'll lose it.

So, when we all got sick with ME/CFS our bodies deconditioned to whatever level of functioning we could manage. If we are lucky and experience remission, we recondition naturally just by getting up and moving around. As has been stated over and over, conditioning with ME/CFS is not without some serious risk of inciting whatever inflammatory and damaging process that causes ME/CFS. Further, it is pointless because a lot of us can't sustain the higher level of functioning that we should apparently be conditioning for. Anytime someone discusses conditioning they must take into consideration what can be safely sustained -- something that is not always static and therefore difficult to predict.

 

[Cloud]

Not understanding the harsh results of crossing over that invisible line of stress intolerance is the primary reason my ME/CFS progressed from mild to severe. For many of the early years with this illness, I kept struggling to keep my life. I was on and off work/disability many times with each attempt causing another notch in the progression of the disease. This went on for years becoming more ill with each crash until I ultimately crashed into severe bedbound illness, and didn't get back up. I had been like a man in quiksand....the more I struggled, the faster I sank. Sure that was harsher than a GET exercise program, but the same mechanism causing that disease progression does the same with a gentle, calculated, and cautious GET program. My point is that from my experience, GET can and will cause disease progression. It won't just cause that acute temporary crash we all experience every time we go too far....it will also cause the disease to progress. I have tried every possible cautious attempt at improvement with GET......it doesn't work. In fact it's very dangerous. And pacing only serves to "prevent" more crashes and disease progression, it does nothing for improvement from baseline. There are pwc's who report improvements with graded exercise....Very much the opposite for me. I think we must have different diseases because for me GET is lethal. I can only conclude that anyone who disagrees with this does not understand what I consider to be real ME/CFS.