ME/CFS: An evidence based approach to diagnosis and management

[Bob]

The differences between pacing and GET are vast in terms of the effects they have on an individual patient and the effects they have politically or on the community as a whole. There is little, if any, overlap between the two.

For example: 1) by its nature pacing is not harmful and 2) it cannot easily be mistaken for 'exercise' by the media and clinicians and therapists and 3) it's not based on a fear/avoidance/deconditioning model of illness but is based on a sensitive understanding of the nature of the illness.

Pacing doesn't ignore the nature of the illness but can be used to sensitively tune into the needs of the patient. It doesn't suit everyone but I've personally found it absolutely invaluable, and I'm sorry that it's not promoted more widely. I was exceptionally pleased when I discovered pacing, not because of Stockholm Syndrome, but because it worked for me. I've never considered it a treatment, but it helped me manage my activity, my symptoms and my illness, and it led to a stabilisation over a long period of time. Or, at least, it's my educated guess that pacing led to a stabilisation, but I can't be certain it wouldn't have happened anyway. With no treatments on offer, some sort of control over my illness and a stabilisation was more than welcome. In many different illnesses, patients have to manage the illness in some way. e.g. diabetes and asthma, so I never saw it as any sort of personal insult that I found I could manage my symptoms to some degree.

I don't want to see pacing promoted as a treatment or used as an excuse to further denigrate or abuse patients, but I don't see why the abhorrent abuse that patients receive from the medical establishment should be used as a reason to minimise the single intervention that has ever helped me. Why should the abuse that we receive be used as a reason to further limit my options?

Actually, I would argue that if pacing for ME/CFS was a widely understood concept then it would help protect us from the worst abuses whereby we're told that exercise is good for us etc. I recently had an occupational therapy assessment and the assessor kept bizarrely repeating the mantra "use it or lose it", as if she was speaking to an elderly person with no illness. If the assessor had understood the nature of ME then obviously she wouldn't have said such a stupid thing to me, but if she had understood the concept of pacing then that would also have helped.

The only way you can be blamed for your illness, as far as pacing is concerned, is if you are over-exerting yourself or doing too much. Pacing means to slow down and to rest more when symptoms are flaring. I can't see the harm in that philosophy either on an individual basis or on a wider political basis.

Pacing has never been an enemy of our community. Except when it's been appropriated by GET therapists and GET has been relabelled as 'pacing-up' as a corrupt and misleading public relations ploy.

Pacing is a sensitively and insightfully designed extension of the protective mechanisms that we automatically employ to avoid the harmful effects of exertion. It doesn't ignore the nature of the illness like GET does, and it isn't based on a corrupt model of illness, but it's based on a deep understanding of the nature of the illness. i.e. it's designed around the concept of post exertional malaise or PENE.

But, I do agree that it shouldn't be promoted as a treatment or therapy etc., and it shouldn't be assumed that everyone finds it helpful.

 

[SOC]

Pacing of activities with strategic rest periods is, in our opinion, the most important coping strategy patients can learn to better manage their illness and stop their post-exertional fatigue and malaise. Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.

I'm good with this paragraph right until the end. To me this sounds like if you budget your money well, you will eventually begin to earn more money. It makes no sense. Yes, you can make the most of the money you have. That will not make more money start coming in from nowhere.

In addition, many of us are living at the energy equivalent of far below poverty level. The idea that simple budgeting will somehow bring us magically into upper middle class is laughable. The QOL improvements that come from budgeting (energy or money) exist, but let's not be so foolish as to expect budgeting to create something out of nothing. Yes, pacing can give us QOL improvements in some areas. They are not overall improvements in functionality. The improvements in functionality are so miniscule by the standards of any healthy person that they would probably not even recognize them. In fact, most healthy people would perceive it as us losing overall functionality because we are now doing less (although we may have less pain, exhaustion, cognitive problems, flu-like symptoms, etc).

Perhaps some people not actually living with PEM have gotten confused with the idea that since pacing can reduce ME symptoms, we should then therefore be able to do more because we're not PEMing or in severe pain if we pace really well? Are they missing the point that we aren't suffering severe symptoms because we're doing less and that doing more just means we have all those ME symptoms again?

 

[SOC]

I was exceptionally pleased when I discovered pacing, not because of Stockholm Syndrome, but because it worked for me. I've never considered it a treatment,

Exactly. I'm a big fan of pacing, and I've said so many times, including in this thread. Stockholm Syndrome only comes into play if someone expects us to be enthusiastic about pacing as a sole treatment for ME.

Enjoying food by itself is not an indication of Stockholm Syndrome. It's healthy and normal. What's not healthy and normal is being extremely grateful and respectful to people who have been abusing you simply because they stopped abusing you (however briefly) and offered you something small and routine. "These guys are wonderful because they stopped beating me and are now giving me food!"

Pacing is great. I'm a huge supporter. I think more ME patients would suffer less if they could learn to pace properly. That's not a treatment for ME. It's a stopgap at best. It doesn't make the condition better, it just teaches us how not to make ourselves worse.

It's like a crutch for a badly broken leg. A crutch doesn't treat the broken leg. If you don't set the leg and reduce inflammation and whatever, the leg is still badly damaged. Having a crutch just helps you not make it worse. That's not a bad thing, but it's pretty pathetic as a treatment for a broken leg. We'd all be angry if we went to the ER with multiple compound leg fractures and they handed us a single crutch and called it a treatment and told us that if we used the crutch we'd slowly get better. Well yes, in a sense, we would. The bones might knit badly and we might get infections, and we'd never be able to walk normally again, but the bones might grow together. Are we supposed to be happy about that? The crutch is very useful. We need it while the treatments are working. But the crutch itself is not a treatment, and we should not be gushingly grateful that we got a crutch when we need major treatment.

 

[unto]

I owe much to moderate exercise (walking an hour a day) ...
I'm lucky to be able to do almost everything I need to live, from the care of the house and of my person; the thirty years of ME 20 years I worked and ten
I'm at home, I take care of my mother, I must say it like working ...
I am convinced that a gentle exercise is very good for the body (circulation, digestion, metabolism ...) ... and the psyche; I understand, however, that there are sick why physical activity is not suitable or harmful, however, my advice is to do it if you can.
Hello

 

[Kati]

If you approach your government for research funding or clinical trial regarding ME and present this disease as something that gets better by lifestyle choice and through symptom management, do you think they will give more money, or even fund a Rituximab trial?

The large medical population thinks we have inappropriate illness beliefs and a lifestyle problem that is simply corrected by self-management. Think about the very severe, like Karina Hansen or Whitney Dafoe. Beyond pacing. Beyond eating more veggies. Beyond electrolyte drinks. Beyond positive thinking.

This contributes to delaying medical research, access to care, access to a medical specialty, access to disability insurance coverage, and much much more.

Pacing is pretty basic once you understand the gist of it. It is absolutely horrible that physicians receive their salary in teaching patients how to pace because we the patients are worth much more than that. What a waste of brain power.

 

[halcyon]

I'm good with this paragraph right until the end. To me this sounds like if you budget your money well, you will eventually begin to earn more money. It makes no sense. Yes, you can make the most of the money you have. That will not make more money start coming in from nowhere.

Agreed. I've been pacing aggressively (18-22 hours bed rest a day) for over a year now as well as taking antiviral treatment, and while I've had symptomatic improvements, I am not capable of any more than I was when I started. I still get extreme and abrupt symptom exacerbation after minor exertion. I don't view pacing as a treatment, it's more of a safety measure. It's the only thing we can do to prevent an increase in the severity level of our illness. And for some even this is not enough and they still slide downhill.

 

[lansbergen]

I don't view pacing as a treatment, it's more of a safety measure. It's the only thing we can do to prevent an increase in the severity level of our illness.

I agree

 

[barbc56]

Pacing can be very helpful. I know that when I travel, which is rare these days, I will need to rest for at least a day afterward traveling, rest frequently during visits as well as making sure I rest after getting home. Depending on the type of travel, distance, these times may vary. There will also be times that I simply am not up for any visit.

I know I've reported this before, so yawn if you need to, but one of the best things my doctor recommended, was short term therapy with a nurse who went back to school to become a therapist. She basically created her own job and pitched it to the powers that be. Her work was exclusively for people with chronic illnesses. Never once was it brought up that this illness was psychological or that exercise a cure.

She'd seen so many patients with chronic illnesses and her advice was invaluable. But it wasn't a cookie cutter approach where you get a couple of pages of suggestions to read and leave it at that. It was very individualized. Plus helping you process what's going on, being realistic about your expectations and that there would be times of utter frustration is a part of life and even more with having a chronic illness. Learning to look for cues, dealing with family members, advocating for yourself or getting others to do this for you as well as learning to think in a way to help you come up with ideas on your own and accesing social as well as access to outside services if needed.

It was very practical and that's what I like. The only thing that I think would have also helped would be to have family members go through something like this.

Unfortunately, she retired and wasn't replaced. As far as I know the only thing close to this is with the oncology department.

Barb

I stopped after five edits so disregard grammar, spelling and clarity.

 

[MeSci]

The only way you can be blamed for your illness, as far as pacing is concerned, is if you are over-exerting yourself or doing too much. Pacing means to slow down and to rest more when symptoms are flaring. I can't see the harm in that philosophy either on an individual basis or on a wider political basis.

I wouldn't underestimate the ability of some doctors and researchers to blame us for not getting better because we are pacing 'wrongly'. They may still decide that we are resting too much due to fear of activity!

 

[Bob]

I wouldn't underestimate the ability of some doctors and researchers to blame us for not getting better because we are pacing 'wrongly'. They may still decide that we are resting too much due to fear of activity!

I don't underestimate the level of ignorance and abuse within the medical establishment. I'm living it day to day. But should the abuses of the medical establishment mean that we become so defensive that we reject the things that actually help many of us, in case there is a chance that they are abused? (I'm not sure I know the answer - but perhaps we are letting them win if their actions lead to us abandoning the things that actually help us?) Pacing, and the philosophy behind it, has never been harmful for the community, as far as I'm aware.

I do have sympathy for the thoughts expressed in this thread, but I don't think pacing is our enemy. We know who harms our lives, and the reasons why. It's possible that they could corrupt pacing, but then it wouldn't be pacing.

A 'fear of activity' is not part of the pacing philosophy. Pacing is the opposite of that: pacing encourages you to slow down and rest when you are concerned that your symptoms are in danger of flaring, or when they are flaring. So it's the opposite of GET. The philosophy behind pacing has a deep and sensitive insight into the illness rather than being a corruption of the illness. And it's based on a biomedical model of illness.

 

[Bob]

Just out of interest, I recently came across this from the Hypermobility Syndrome Association. It seems to be endorsed by the NHS. I wasn't aware that pacing had been developed and promoted for other illnesses.

https://twitter.com/i/web/status/668740284491153408

 

[Aurator]

But should the abuses of the medical establishment mean that we become so defensive that we reject the things that actually help many of us, in case there is a chance that they are abused? (I'm not sure I know the answer - but perhaps we are letting them win if their actions lead to us abandoning the things that actually help us?) Pacing, and the philosophy behind it, has never been harmful for the community, as far as I'm aware.

I do have sympathy for the thoughts expressed in this thread, but I don't think pacing is our enemy. We know who harms our lives, and the reasons why. It's possible that they could corrupt pacing, but then it wouldn't be pacing.

A 'fear of activity' is not part of the pacing philosophy. Pacing is the opposite of that: pacing encourages you to slow down and rest when you are concerned that your symptoms are in danger of flaring, or when they are flaring.

I'm not sure that anyone thinks pacing is the enemy, Bob. I think any reservations that have been expressed in this thread are not about pacing itself but about certain people's actual or potential misinterpretation of the function of pacing as being something that can actually cure us of the core malaise we are suffering from.

I agree entirely with you that a fear of activity is not part of the philosophy of pacing; the snag is that pacing will inevitably mean different things to different medical practitioners, and in some at least of these people's "philosophies" it is almost certain to be thought of and treated as little more than GET by another name.

 

[MeSci]

I'm not sure that anyone thinks pacing is the enemy, Bob. I think any reservations that have been expressed in this thread are not about pacing itself but about certain people's actual or potential misinterpretation of the function of pacing as being something that can actually cure us of the core malaise we are suffering from.

I agree entirely with you that a fear of activity is not part of the philosophy of pacing; the snag is that pacing will inevitably mean different things to different medical practitioners, and in some at least of these people's "philosophies" it is almost certain to be thought of and treated as little more than GET by another name.

That's right.

I don't think we are being defensive - just anticipating problems, based on bitter experience and knowledge, due to the suggestion in the review that pacing is a cure, plus knowledge of how doctors already view us due to the widespread nonsense that has been purveyed for decades.

Pacing is VITAL.

SOC made some excellent points such as pacing allowing other treatments to work as we are not repeatedly damaging our bodies, and the crutch analogy.

Pacing might to some extent facilitate recovery or improvement, but not bring about it on its own.

 

[Keela Too]

I haven't read all the comments yet... but adding ONE word would make that more acceptable to me... add the word PERHAPS.....

The concluding sentence should read:

Pacing allows patients to regain the ability to plan activities and PERHAPS begin to make slow incremental improvements in functionality.

 

[jimells]

We deserve more than behavioral therapy and symptom management.

Amen to that.

No this is not the best we got at the moment. People improve with immune modulators and antivirals. The Norwegian team, Dr Lerner and Montoya/Kogelnik have shown this. Then there is Ampligen.

Certainly some do improve with these treatments. Others do not. I've tried antivirals, a dozen or two of other pharmaceuticals, boatloads of supplements, etc etc. and I am still forced to spend most of the day and night laying down. As soon as a real treatment becomes available to me, I will be in line to get it. Until then, I'll keep pacing and try to convince doctors to help me manage my symptoms.

 

[Bob]

I'm not sure that anyone thinks pacing is the enemy, Bob. I think any reservations that have been expressed in this thread are not about pacing itself but about certain people's actual or potential misinterpretation of the function of pacing as being something that can actually cure us of the core malaise we are suffering from.

I agree entirely with you that a fear of activity is not part of the philosophy of pacing; the snag is that pacing will inevitably mean different things to different medical practitioners, and in some at least of these people's "philosophies" it is almost certain to be thought of and treated as little more than GET by another name.

I don't think we are being defensive - just anticipating problems, based on bitter experience and knowledge, due to the suggestion in the review that pacing is a cure, plus knowledge of how doctors already view us due to the widespread nonsense that has been purveyed for decades.

OK, so there seems to be some agreement in this thread that some people find pacing helpful or invaluable, and it can help some people manage their lives and symptoms, but that it's not a treatment or cure, and it doesn't help everyone.

But, unless i've misunderstood, some people in this thread seem to be saying that pacing should not be promoted because there is a chance it will be corrupted and used against us. i.e. It will be used against us by ignorant health professionals because pacing and the illness are misunderstood, or it will be corrupted by those within the medical establishment who will use it to promote their own agendas.

Pacing teaches patients about the nature of the illness, and it enables people to monitor symptoms, adapt to the illness, and avoid relapses. It teaches patients that they should rest and not strive to push against symptoms.

So, my question is... Should patients who are newly diagnosed with ME/CFS have this (in my view: essential) information, and symptom management tool, withheld from them because there is a chance that pacing is corrupted by the medical profession?

 

[Bob]

No this is not the best we got at the moment. People improve with immune modulators and antivirals. The Norwegian team, Dr Lerner and Montoya/Kogelnik have shown this. Then there is Ampligen.

We all want biomedical treatments but, according to the research, antivirals and Ampligen are not effective for the vast majority of patients. A small minority of patients respond well to them. That's partly why they're struggling to convince the authorities to approve them. If my memory serves me well, they are trying to identify subsets who might respond to antivirals and Ampligen. As for immune modulators, my understanding is that they have little benefit as a rule. I think Nancy Klimas uses Imunovir but my understanding is that it has limited benefit. I've found gabapentin useful, but the side effects were severe so i couldn't continue it.

 

[Marky90]

We all want biomedical treatments but, according to the research, antivirals and Ampligen are not effective for the vast majority of patients. A small minority of patients response well to them. That's partly why they're struggling to convince the authorities to approve them. If my memory serves me well, they are trying to identify subsets who might respond to antivirals and Ampligen. As for immune modulators, my understanding is that they have little benefit as a rule. I think Nancy Klimas uses Imunovir but my understanding is that it has limited benefit. I've found gabapentin useful, but the side effects were severe so i couldn't continue it.

I agree, we should focus on the lead given from the rtx-trials. Are there plasma cells involved, and in what way.. Is it autoimmune, or is the problem actually with the way microglia reacts to immune cells. All possible scenarios I have seen proposed here.

Btw have people without infections responded majorly to ampligen?

 

[Marky90]

Meanwhile Hornig/Lipkin will explore about everything else.. So that`s incredibly promising.

 

[MeSci]

OK, so there seems to be some agreement in this thread that some people find pacing helpful or invaluable, and it can help some people manage their lives and symptoms, but that it's not a treatment or cure, and it doesn't help everyone.

But, unless i've misunderstood, some people in this thread seem to be saying that pacing should not be promoted because there is a chance it will be corrupted and used against us. i.e. It will be used against us by ignorant health professionals because pacing and the illness are misunderstood, or it will be corrupted by those within the medical establishment who will use it to promote their own agendas.

Pacing teaches patients about the nature of the illness, and it enables people to monitor symptoms, adapt to the illness, and avoid relapses. It teaches patients that they should reset and not strive to push against symptoms.

So, my question is... Should patients who are newly diagnosed with ME/CFS have this (in my view: essential) information, and symptom management tool, withheld from them because there is a chance that pacing is corrupted by the medical profession?

I either haven't noticed, or have forgotten, if anyone has said that pacing shouldn't be promoted by doctors.

I strongly consider that it should be, and should have been for a long time, instead of doctors telling us to exercise!

I just hope that doctors themselves fully understand what pacing is.