The Lancet — one of the most highly regarded journals in the world — is back on the chronic fatigue syndrome (ME/CFS) community’s front page. That’s probably enough to either elicit curses from ME/CFS patients or to produce a strong desire to hide under one’s bed. Lancet’s ME/CFS offerings of late have been dominated by the PACE CBT trials and their controversies. Lancet’s refusal to retract that study is bad enough; it’s unwillingness to allow skeptics to publish a letter stating their concerns (after Lancet asked the PACE authors whether they should) was just plain weird. It’s editor, Richard Horton, can hardly control himself when talking about the ME/CFS community.
Lancet is back with another ME/CFS behavioral study…
Now Lancet is back with guess what? Another behavioral chronic fatigue syndrome trial. To make sure EVERYONE can read it, they put it in their free article section. Lancet has occasionally allowed dissenters to publish letters but there’s no doubt as to the journals pro-behavioral orientation to this disease. What’s more doubtful is whether the studies they’re publishing are helping their case.
Clark, LV, Pesola, F, Thomas, JM, Vergara-Williamson, M, Beynon, M, and White, PD. Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): a pragmatic randomised controlled trial. (published online June 22.) Lancet. 2017
As usual in UK-funded CBT/GET trials the trial was very large (n=211), far larger than non-CBT/GET trials in ME/CFS. in size. That size differential alone gives CBT/GET an advantage because it gives researchers more ability to tease out less subtle effects.
Another advantage — crappy entry criteria. The patients had to meet the NICE guidelines — a slightly more restrictive version of the much derided and now officially debunked (see the AHRQ report) Oxford criteria. Since most of the patients chose walking as their exercise activity of choice we can assume that not many of the really ill were included.
NICE Guidelines:
- 4 months of clinically evaluated, unexplained, persistent or relapsing fatigue with a definite onset resulting in a substantial reduction in activity that is characterized by post-exertional malaise or fatigue, or both.
- One of the following symptoms: difficulty sleeping, headaches, cognitive dysfunction, general malaise or flu-like symptoms, painful lymph nodes, sore throat, physical or mental exertion making symptoms worse, dizziness or nausea, palpitations, or multi-site muscle or joint pain without evidence of inflammation.
One wonders when the U.K. and the Netherlands are going to say enough is enough with CBT/GET. How much more, after all, can one say about a therapy’s effectiveness after dozens of studies have been published? They’re certainly not giving up yet.
This study’s twist is that it employed a graded exercise self-help component it’s proponents could be administered cheaply. The participants met with a physiotherapist up to four times to ensure that they were doing the program correctly, but otherwise worked off a GET handbook containing a six-step graded exercise program that took about 12 weeks to complete.
The participants (half were in the GET program and half were in normal care) were assessed at baseline, four weeks after the trial ended, and 12 months after the start of the trial. The Chalder Fatigue scale and Physical Functioning subscale of the SF-36 tests were used to assess results. Another questionnaire asked the patients how much better their health was after the trial.
As in the PACE trial, some changes were made in the study protocol but I’ll leave it to David Tuller, Julie Rehmeyer, Tom Kindlon, Graham and other patient statistical experts to parse out if they might have affected the study.
The Graded Exercise Therapy Program
The Graded Exercise Therapy Booklet (find it here) is humble in many of its promises. It does not promise that ME/CFS patients will be cured or that they will be able to do all the activities they did in the past. It also does not delegitimize problems with exercise or suggest that ME/CFS is all in one’s mind; instead it suggests that prior exercise attempts may have failed because they were too rigorous.
Ignoring the fact that the program has not been tested in more severely ill ME/CFS patients, the booklet states:
A GET programme will help you gradually improve your ability to undertake some of the physical activities that you have been unable to do since becoming unwell.
The short theory section unmasks the limitations of GET and the program. GET, it turns out, is primarily designed to address two factors: deconditioning and the boom/bust cycle.
Deconditioning
Deconditioning is real in ME/CFS but nothing suggests it causes the disease.
It’s clear that deconditioning is present in some ME/CFS patients; in fact, it’s unavoidable. Any disease that so severely limits functioning is going to cause some deconditioning — a physiological state of inactivity which produces a horde of negative effects.(Hold your breath)
Deconditioning results in decreased muscle strength, structural changes to the nerves and muscles, reduced co-ordination and balance, connective tissue thickening and muscle shortening that affects movement (hence the stretching exercises), reduced blood volume, increased inflammation, bone demineralization, stroke volume (heart), thickened blood, orthostatic intolerance, decreased gut motility, constipation, increased risk of diabetes, cognitive problems, sleep disturbances, irritability and depression. (!)
Unfortunately it’s really hard to determine how much bedrest is needed to cause deconditioning or how much activity is needed to stave it off. (One website did say that even by short periods of upright activity can stave off some effects of deconditioning.) It’s clear, though, that deconditioning process can begin within days of being bedbound. Ten days of bed rest in healthy adults resulted in significantly reduced maximum aerobic capacity. Muscle wasting and problems with orthostatic intolerance can occur within days.
Unfortunately for the purveyors of GET and their emphasis on deconditioning, while deconditioning is surely present in some ME/CFS patients, there’s no evidence that deconditioning plays a major role in producing ME/CFS. Systrom’s fascinating invasive CPET study of ME/CFS and other patients with idiopathic or unexplained exercise issues uncovered a heart filling pattern that is opposite to that found in deconditioning. The results of other exercise studies argue against deconditioning being a core element of ME/CFS. Deconditioned people, after all, should improve on a second exercise study; many people with ME/CFS do worse. Even Wyller’s studies (Wyller is a strong proponent of CBT/GET) find no evidence that deconditioning contributes to the core issues in ME/CFS.
If deconditioning is present in some ME/CFS patients, but is not causing ME/CFS, a program like GET should have some positive effects but not many. It should help people around the edges but not significantly affect their core issues. That’s exactly what happened in this study.
The Boom-Bust Cycles
The booklet indirectly acknowledges the major role post-exertional malaise plays in ME/CFS by emphasizing that getting enough rest and avoiding overdoing activities that result in a crash or relapse is critical to the success of the program.
(Note the unusual blend of “treatments” in this program: one is designed to slowly increase activity; another to limit it and ensure that ample rest is present.)
The Six Step GETSET Program
The GETSET program consists of the following steps:
- Stabilize activity levels: Use a diary to stabilize one’s activity levels and avoid boom-bust cycles for a week or so.
- Begin a stretching program: See booklet for numerous stretching exercises.
- Decide on an enjoyable, regular activity goal
- Add one activity/exercise: About 2 to 3 weeks in, add an activity you can do without making you worse — even on a bad day. Do not do more than your planned activity, even if you feel up to it. Take a short rest after the activity/exercise in a sitting position.
- Increase exercise duration: Increase the amount of exercise by 20% a week. If you only increase exercise (and keep your baseline activity intact), the booklet says “your body will adapt”. The program shows a person starting out at 10 mins a day, ending up with 30 mins a day after 12 weeks.
- Increase exercise intensity: Once you’re able to walk 30 minutes a day, five days a week, increase the intensity (e.g. by walking faster) very slowly over several months.
Notes from the booklet: Maintain as much physical activity as you can, even if it is uncomfortable. If you have to take a break, get back to your exercises program as soon as possible. An increase in symptoms does not necessarily mean that harm is being done.
Results
The results of the 200-plus study were decidedly underwhelming. Yes, a higher percentage of patients using the remote form of GET improved than those receiving normal care, but not by much. On a scale of 0-33, with 0 meaning no fatigue is present, the GET patients’ fatigue improved by just 4 points, or about 12%. GET moved the needle on physical functioning — an arguably more important measure — by even less (just 6 points out of a hundred). That outcome was similar to a Cochrane Review which found that GET produced “little or no difference in physical functioning, depression, anxiety and sleep”.
When asked to rate their overall health following the trial, the good news for GET proponents was that a much higher percentage of GET participants reported feeling much better than did those receiving normal care. The bad news was that the percentage of those really benefiting from the program was small, indeed, with just 1 out of 5 reporting feeling “much better” or “very much better”.
With few patients reporting they were much or very much improved by the protocol, the results were underwhelming
More good news for the GET proponents included the low dropout and low serious adverse events rates. The bad news was that only about 40% of the participants (42%) adhered to the protocol “well” or “very well”. That suggested that either some stopped before an adverse event could occur or that the protocol was simply too difficult to manage for many. An easily manageable protocol is a key goal in therapeutic trials; treatments are worth little if they’re too difficult to adhere to.
The elephant in the room was (once again) the missing activity or actometer measurements. Since GET is specifically designed to increase activity levels measuring that increase — easily done with an actometer — having one seems like a no-brainer, yet once again actometers were not included.
In the end the improvement was similar to what one might have expected in a population in which some deconditioning was present. It’s possible that the remote GET program may have improved some patients’ deconditioning (the worse off patients did better) but failed to move the bar in a major way in the disease itself. Physical functioning was barely touched and most in the study (80%) reported that their health was not much or very much better after doing the remote GET protocol.
There’s nothing the matter with — and everything right with — an appropriate exercise program. The problem is the outsize influence CBT/GET studies have had on how ME/CFS is viewed and treated. The GET SET program’s detailed (diary-based) approach to managing activity levels seems encouraging but it was surely optimistic in its projection that activity levels would climb over time. It’s assertion that symptom exacerbation doesn’t reflect harm was questionable as well. (Symptom exacerbation (muscle soreness, fatigue), of course, occurs with any increase in exercise but is brief and the exerciser is left stronger not weaker.) Staci Stevens’ and Dr. Klimas’ heart-rate based activity management programs — specific exercises with rest times — provides a more sophisticated approach for people with ME/CFS. Learn how to do those in the link below.
- Learn how to do a heart rate based exercise program in Health Rising’s Exercise Resource Center for Chronic Fatigue Syndrome (ME/CFS)
Check out a report of a patient who significantly increased her activity levels and fitness and even cardiovascular measures using Staci Stevens’ heart-rate approach, which required that she keep her heart rate below a certain level.
The Lancet Effect
Lancet, not surprisingly, filled its comment age with CBT/GET proponents who lauded the study findings — demonstrating again what a low bar for success exists in these studies. Daniel Clauw, M.D. — a fibromyalgia, not an ME/CFS specialist — lead the applause stating, “The finding that graded exercise therapy is effective even when exercise is not being witnessed and directly guided by a physiotherapist is a substantial advance”.
Clauw turned a study which significantly benefited a minority of the participants into a blanket statement that GET was effective for all.
But effective for whom? The study’s own findings indicated that most ME/CFS patients in the trial (66%) were not significantly improved and less than 20% rated their health as much better at the trial’s end. (This is in a study put together using a definition not that dissimilar from the Oxford one, a lax criterion).
The results were decidedly underwhelming and the lead author’s statement, read carefully, reflected that: remote GET, she said, helped “some” patients “manage” their symptoms.
“We found that a self-help approach to a graded exercise programme, guided by a therapist, was safe and also helped to reduce fatigue for some people with chronic fatigue syndrome, suggesting that it might be useful as an initial treatment for patients to help manage symptoms of chronic fatigue syndrome. Dr. Lucy Clark
Symptom management is fine, but effective symptom management should affect more than a minority of participants. Even better, of course, would be a cure. One wonders when the U.K. is going to give up its decades long obsession with CBT/GET and actually try to get at the cause of this disease. Results like these should help U.K. administrators make that switch.
We pretty much know what behavioral therapies can do: they can help with fatigue for a few but do little to improve physical functioning. Neither come close to curing this disease and few, if anyone anymore, are suggesting that they can. The results from both the PACE trial (even in its original version), and this study suggests it’ time for the U.K. and others to get off the behavioral bandwagon and spend some money trying to really help ME/CFS patients.
Health Rising Exists Only Through Your Support
Please Support Health Rising With a $5 (or more :)) a Month Recurring Donation
(See Donor widget on the right-hand side of this page)
Thanks for this speedy and helpful write-up. I’m in the UK and it is a constant frustration that the meagre pot of ME research money is always invested in GEt/CBT solutions. Clearly the NHS is looking to save money – this would mean that patients with ME go away with a booklet and that’s the sum amount of care they would receive.
For the UK to change, Simon Wessely and other powerful people in the medical arena would need to lose their position, or the political will would need to change. That’s why it’s vital for us to maintain the protests and awareness-building, little by little, so we reach tipping point.
Under Uniform Commercial Code Laws Arrest them all in Commerce Sue them from the Private side of Laws file Commercial Liens it is an Arrest Warrant in Commerce tie their Ships up to the Walls we would see this
practice stopped immediately & get a proper diagnosis Ehlers Danlose Syndrome with likely (HFI) hereditary fructose intolerance one thing is certain it is not Lyme disease as some perceive…I just got referred
to CBT/GET, I am 100% not going…Lactose Gluten Sucrose Fructose Fructans Sorbitol Stop eating this if one has (HFI) diagnosed plus also Spontaneous Spinal Fluid Leaks now goes with EDS type & one can have
multiple types of Genetic Born EDS like also VEDS Vascular Ehlers-Danlos Syndrome combined with most likely type EDS 3 Hypermobility.Also Blocked Veins at Neck seen in EDS as well using an ultrasound.
Hi Cort,
I am 13 years into my ME/CFS odyssey, and am dying (almost literally) to try a Klimas/Stevens type of reconditioning approach, and I’m willing to do it with or without medical oversight. I am in Philadelphia, though, where I haven’t been able to find any sort of good medical support. I can’t travel far at all. Do you, or does anyone here, know whether Klimas/Stevens have put out detailed enough instructions to follow their approach, and would it be possible to follow it with instrumentation you can use at home? Better yet, does anyone know a good rehabilitation doctor for ME/CFS in the Philly area, or even a knowledgeable Physical Therapist?
Hi Agatha – Yes, you can absolutely do this at home. You can find a bunch of how to resources here – https://www.healthrising.org/forums/resources/exercise-resource-center-for-chronic-fatigue-syndrome.168/
Good luck!
Try & go & see a good Metabolic Genetic Doctor most likely an EDS Diagnosis see my Post above
I am over 20 years on my journey with beginning Mono, CMV, EBV and Pesticide Poisoning. I was a former Reg Dental Hygienist and an exercise instructor and also Exercise enthusiast. I have found that the best exercises to keep me healthy enough, not over anything just where I can function well most days are stretching exercises first in bed -before I get up. U do all areas lying on my back. The sitting up to stretch out my neck area which help with the Dizziness.
If I let myself get really stressed or pushed to hard -I have to sleep more and back off-but get back to them as soon as I can. Mentally it does help and I find Stress triggers everything. Have to fight that all the time. I do better doing my exercises alone in a quiet area. Not in a group. It is too much. I do not like to travel anymore and do not want to be in crowds.
On the exercises I do many for my legs and hip and Core area on my back. Then sit up for the stretching ones on my legs and neck.
I also used to be a runner and then walked 70 miles a week . Felt wonderful-but that is then and not now.
I do not believe in graded exercises for me as , as soon as I try going up on what I do I pay for it and have to go back. I do 30 min pm and 30 min PM. All on my back.
All of these were from PT from years ago. I do get massages-but sometimes that sets me off too-so not too often.
Thanks Cort for all you do for Patients.I think most of our problems from a mental standpoint are “we keep hoping we could go back to the way things were” I do better when I do what I can and when I can.
Carole
Maybe join the ME/CFS pacing with a heart rate monitor group. Heaps of info on workwells website.
Indeed!
It is endlessly discouraging that even informed advocates continue to miss the point put so well by the IOM: the defining feature of ME/CFS is that ‘exertion of any sort – physical, cognitive, emotional – may adversely affect many organ systems….’
Exertion can do multisystem damage, as those with severe ME can attest.
The fundamental ‘treatment’, which is freely available, is, as Ramsay said, complete rest from the inception. Then, far from adding exertion in any form, the correct course of action is to design ones lifestyle so as to maintain as much as possible of normal activities by absolutely minimising the exertion involved
The rationale for this is relatively straightforward: we have an ongoing but hidden viral infection which is stimulated by use of our muscles (probably a relative of the polio virus). Our only line of defence, in the absence of an effective pharmaceutical treatment, is the activity of our immune system. Our immune system requires immense amonts of energy to function. By minimising any other expenditure of energy, we maximise that available to our immune system.
We are not deconditioned. Part of the nature of this disease is that our aerobic muscle metabolism does not work. It follows that the usual benefits of exercise, which depend on the functioning of the aerobic metabolism do not occur.
If you want to get better, rest as much as possible, get every disability aid available to you to help you manage your job, education or domestic responsibilities with a minimum of exertion, and know that time spent doing absolutely nothing is the most effective treatment yet available.
http://www.positivehealth.com/article/cfs-me/lost-in-translation-the-me-polio-connection-and-the-dangers-of-exercise
I don’t think we should be afraid of the word deconditioning. It’s a consequence of being unable to move. It doesn’t matter how it happens. If impaired aerobic functioning doesn’t allow you to move then you will become deconditioned; if heart disease doesn’t allow you to move you will become deconditioned; if a stroke doesn’t allow you to move you will become deconditioned – so yes, if ME/CFS doesn’t allow you to move you will become deconditioned.
Nancy Klimas very bravely spoke on the deconditioning in ME/CFS a couple of years ago – https://www.healthrising.org/blog/2013/01/23/chronic-fatigue-syndrome-mecfs-deconditioning-exercise-and-recovery-the-klimas-cdc-talk/ – it exists and there are things that many of us can do about it.
Hi Cort,
Thank you for updating us on this new study, and your analysis.
It has been pointed out to me that the psychosomatic model for any, and all health conditions are alive and well. A disappointing fact. No matter how much we want the GET/CBT/ME mythology to vanish, it may always be with us. Some still blame cancer patients for their wrong minded beliefs having caused their cancer. An extremely wrong minded approach in itself, as is blaming pwME for their illness by touting GET and CBT as cures. It appears that’s all the psychological approach to ME is: blaming the patient. A favourite world view for many. One’s misfortunes are of one’s own making, regardless of outside influences. The GET/CBT crowd may always be with us.
What we need of course, is for the already substantial, and sufficient evidence that ME is a serious physical disease to counteract this destructive, and harmful psychosomatic model. We need to keep cranking out the correct info, and find new and innovative ways to do this. The community support of David Tuller’s work is an example of a new and innovative way. The films “Unrest”, and “Forgotten Plague M.E. And the Future of Medicine”, are new and innovative ways. The books by Julie Rehmeyer, and Valerie Free, are both tried and true methods, as well as being new and innovative ways.
Canadians with ME have been contacting Bono on Facebook about our plight. Bono fund raises for over seas health care in underdeveloped countries. Canada has supported Bono’s requests by providing hundreds of millions, while virtually ignoring the 560,000 Canadians with ME. Contacting Bono, and other celebrities, is another new and innovative way our community is getting the word out. I hope we can find others.
Thank you, Cort for your continued work for all of us. Information is power!
I’m most grateful for Nancy Blake’s statement that “the defining feature of ME/CFS is that “‘exertion of any sort – physical, cognitive, emotional – may adversely affect many organ systems….’”
Being too happy makes me sick. An episode of severe symptoms can be brought on when I feel too happy and so I must monitor my happiness to make sure I don’t give in to joy.
I want to be clear that I’m referring not to the outward physical manifestations of happiness of clapping my hands, talking more than usual, laughing, and other movements one does when one is happy. I’m speaking only of the emotion, the feeling, of happiness.
I was diagnosed with ME/CFS in 1992, two years after symptoms began. I was 44 years old. Now I am 69. I’ve had ME/CFS for 25 years.
My world has become so small. On a good day, I say this disease has changed my life. On a bad day, I say it has ruined it. The latter is more true. I’ve gone from a highly productive and active woman to a pitiful specimen of lost potential, lost hopes and dreams.
I don’t feel well enough long enough to complete the GET.
Thank you.
I am talking
When I get too excited the same thing happens. It’s a puzzling disease. Did you happen to catch Dr. Pocinki’s Dysfunction junction? https://www.healthrising.org/forums/resources/the-dysfunction-junction-the-ans-autonersysme-cfs-by-dr-alan-pocinki.404/
In it he describes how even small changes can disrupt the autonomic nervous system of ME/CFS patients.
How does someone in the US, get disability from Social Security for this condition? My Rheumatologist told me to take Gabapentin and do vigorous exercise..this was all. I cannot tolerate the drug or do what she asks. I have abnormal spect scans, antibodies to thyroid and EBV, a damaged Pituitary now, testing done by 10 different doctors, each finding 1 or 2 issues. No one puts the abnormal labs together to see what is happening. All are viewed separately No doctor, will say i am disabled. I have trouble digesting food and am so ill, i can only be out of bed, 3 hours per day. Where can i find doctors and lawyers, who know about this, in my city?
Thanks so much
The best way I know of to visit the Workwell Foundation in California or Betsy Keller in Ithaca New York I think it is and do a one or two day exercise test. http://www.workwellfoundation.org/testing-for-disability/ If the test is positive then that it seems almost bulletproof.
Unfortunately you have to travel to do that and engage in at least 7 or 8 minute exercise test (to exhaustion). We are going to have a disability attorney answer questions on ME/CFS hopefully in the next month or two.
Check out the disability resources for ME/CFS on Health Rising – https://www.healthrising.org/forums/resources/disability-resources-for-chronic-fatigue-syndrome-and-fibromyalgia.217/ – and definitely check out How to Get On – a wonderful website from an ME/CFS patient – https://howtogeton.wordpress.com/
Being happy as a trigger is also true for migraine patients (imbalanced ANS )I wonder how many of FM or CVS patients had or have migraines. Can this forum be a way to find out?
Studies indicate that the rate of migraine in FM and ME/CFS is actually very high. In fact migraines may be the most common co-morbid condition. Even more interestingly one researchers thinks ME/CFS could even be a form of migraine…
https://www.healthrising.org/blog/2013/08/09/is-chronic-fatigue-syndrome-a-form-of-migraine/
https://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/migraine-treatments-and-chronic-fatigue-syndrome-and-fibromyalgia/
https://www.healthrising.org/blog/2015/05/31/fibromyalgia-bad-fibromyalgia-with-migraine-really-bad/
Interesting- As when I really have what I call “a good day” and I am also an Animal Rescuer, I am on top of the world. Too much JOY? No I have learned that I cannot drive in heavy traffic-don’t care where I am going but I can get my Dogs to a local Vet. I can do what I call “One big appointment” a week and that is it-also in my time frame.
If my husband over schedules things-I cancel some of them out. He still doesn’t get it–but I do.
Love all the great comments.
Thanks Cort.
This is for everyone that is sick with these maladies but has not tried a change in diet.No it is not the cure all. No you may not get completely well-but it is a big start. You may not be Gluten intolerant as I am. However the diet I am on took me almost a year to get better-but hang in there. Gluten free (I am Gluten intolerant not Celiac) . Chicken and fish baked or broiled No breading not fried. Veggies and no fruit but Berries. Lots of high Ph water. No sauces. Olive oil if you need it. Many, Many probiotics. Problem is we all want an instant fix. There is none. I am off Immune Globulin now and I do take B-12 shots and Zantac for Gerd. For Gerd I l seep sitting up in an adjustable bed. No Citrus of any kind. Too much sugar.
Not going to cure everything by any means but will contribute to you getting better .Also this is something you can CONTROL. Try this for yourself and see what happens. I am also doing a Protein drink with a Gluten free protein powder that has Avocado, Blue berries, Coconut water , high PH water and ice everyday.
Anyway-
Hi Carol,
Not all citrus fruit contains much sugar:
Lemon has only 2%; quite low in my opinion. http://foodfacts.mercola.com/lemon.html
The high amount of citric acid helps digestion and removing kidney stones according to http://www.nutrition-and-you.com/lemon.html
Both mention plenty of vitamin C and anti-oxidants which should be good for us too. As long as you don’t need sugar to mask the sour taste, sounds healthy.
Being happy is a strong emotion. Any strong emotion is costly on our weakened brains, no matter whether it is so called positive or negative. When I was still quite a lot better I could not have moments of strong happiness. Within five minutes, I got a bouncing headache. The exertion off my brain was so strong it caused strong migraine like effects.
In my opinion, positive emotions are fine, but even that must be tempered a lot. Even if they are only a bit strong, it bites us hard. I find this one of the worser symptoms: “must do active effort (eating up effort/room for other activities) to control all kind off emotions and must put the rare moments of strong joy too an immediate halt”.
The biggest difference between positive and negative emotions seems to be that negative emotions are more self-reinforcing: feeling bad can cause feelings of depression; feelings of depression can increase brain inflammation; brain inflammation can make one feel even worse… That won’t happen with positive emotions.
As always well said Jurgen 🙂 It reminds of Dr. Pocinki’s Dysfunction Junction article. He could show that parasympathetic activation could bounce a patient into a strong sympathetic nervous system response! A truly bizarre response….https://www.healthrising.org/forums/resources/the-dysfunction-junction-the-ans-autonersysme-cfs-by-dr-alan-pocinki.404/
Positive emotions, however, are much better than negative emotions, though.
Forgot to even mention. My Diet which I have been on now for almost 3-4 years has made a drastic difference . If I vary it at all I pay within 2 days. I am on Gluten Free , baked chicken or Fish and veggies, Many, Many Probiotics High PH water. I have
serious GERD and have to take 4 Zantac (all I can take) 2 am -2 PM. Also sit up when I am sleeping.
Anyway- I don’t always have mine managed but the diet is one of my main components. Was Pre Diabetic and and Cholesterol was up slight. This diet has kept me from taking any Meds for either. No sugar other than Berries.
The statement above is so true on the depression can increase brain inflammation.I am now trying to NOT EXPECT THINGS FROM PEOPLE THAT THEY CAN’T GIVE.
VERY HARD TO DO.
Carole
The Lancet is becoming the schoolyard bully of ME/CFS and my question is twofold. 1) Why? And 2) What the hell?
As a long-term housebound ME/CFS patient, I am bewildered and insulted. Sure, I’m deconditioned by this disease, but more importantly, I’m sick. Telling ME/CFS patients to exert themselves is like telling pneumonia patients not to cough. It’s a symptom of the disease. Trying to flip the problem and then sell it back as the cure is both absurd and cruel.
Honestly, I wonder if its all Richard Horton. He’s got a bee up his bonnet regarding CBT/GET and ME/CFS…He’s hardly acting like an objective party.
Why? Probably the answer is as follows:
* At the start, the editor was joyed to get the scoop “CFS solved” but knew it could be somewhat controversial. In order to get the scoop and get it exclusive, the normal peer review process had to be bypassed.
* When it proved a poor decision and might turn out to be a very poor decision, he knew that decision could be seen as a personal mistake endangering the reputation of the Lancet.
* As there are likely more than one hundred other people who are very eager to take his position, he realized that admitting he was wrong and therefore damaged the Lancet would lead to his resign.
In short: it’s like often in politics: once you took a wrong decision, you have to defend if at all cost or risk losing your position. Only the very smooth people can talk themselves out of this sort of mess.
I have the feeling that this sort of flabby effort is perfect for people who want to get on a lucrative research gravy train without breaking much of a sweat. A cure? Why, you have to actually work hard for that, and that’s stressful!
Maybe these gold-brickers need to take their own advice and gradually exercise their brains in order to perform some real scientific research for a change.
I think you’ve hit the nail on the head. Finding out what causes a disease is SOOO much more difficult than applying a behavioral therapy…Kudo’s to you.
The deconditioning aspect is particularly flawed.
As I have had M.E/CFS on and off for my whole life
But ..
I can bench press 300lb. Used to lift 500lb in competition .
How can I be so unfit that I have cold,flu symptoms
exactly three days after…every time.
I have made my situation known to Simon Wesley and I have
a solid physics background.
It’s preposterous.
This may sound strange but if your having
a terrible time with M.E/CFS and in head/body
pain with a bad case of Post Exertional malaise..
then the is quick fix. You may not find the idea
agreeable but taking magnesium creatine in
bodybuilding products will speed up a recovery from
the low.
..and if the head pain/dullness is so bad you
don’t give a damn anymore or your desperate…
Then I would whole heartedly recommend taking a
large inhalation directly from a bottle of
Amyl nitrites<- in the form of readily available
Isopropyl variation.
Thats against the law but it instantaneously
reduces pain and reduces further over twenty minutes.
Blood flow increases to the brain flushing the tissue
with oxygen, nitrogen and seems to assist in several
ways.
Furthermore amyl nitrites are known for keeping one
alert and reduce feelings of tiredness for two hours
or more without the need for stimulants. A remarkable
effect really.
The are very few known side effects and mostly relate to
subtle changes to the body's chemistry.
Take creatine before exercise to maintain recovery potential.
Keep water up.
Cardio is deathly for M.E/CFS but they push the G.E.T system..?
Would you rather be 30% stronger and have 30% more energy efficiency from 120 seconds of weights twice a week..three days apart ?…. or be endlessly trashed physically and emotionally from cardio which yields very little energy capacity increases for short duration activities?.
Well…how could this be??. Well it's because without being adhominem
towards these researchers , it's plain to see that most of them have never done any serious exercise and therfore have no practical experience with ANY client!!!. Poor..and unacceptable.
How can this cardio G.E.T work then?, Please explain kindly
what i am missing here…as i'm a P.H.D in three science
subjects. I'm one of the most qualified and experienced
individuals in the world….and it's in my head?.
Don't let the naysayers talk this thing away.
Im 32 and will be objecting to my lifetime mistreatment
by doctors for a long long time.
You may already know who I am……
We will win because its only a matter
of time either way.
Rob
Really interesting Rob. I’ve wondered about weight-lifting supplements for years. Deconditioning clearly doesn’t apply to you and it probably doesn’t apply to most and it certainly is not causing ME/CFS; if it was everyone would have recovered during this GET trial!
Do read the Staci Stevens link about the patient who used her heart based exercise system. Despite the fact that she never got into aerobic work (as I understand it) her cardiovascular readings improved significantly. She was still sick with ME/CFS though – couldn’t really exercise worth a darn.
I completely agree – it’s only a matter of time. The more they investigate CBT/GET the closer we get to the time they start looking for the real cause.
No no no. Doctor Klimas is very nice and very wrong here. This theory should be long forgotten at this point in the diseases’s history. Its nothing to do with deconditioning or we all would be healthy as horses from our efforts. PEM came fist out of no where. This is a joke. I wish the answer was this simple. We need common sense and to look at where the disease is taking us not trying to fit a square peg in a round hole please we have come to far for this. Lets get back to real science. this is just bad on so many levels. Follow OMF
Dele, please be careful here. Dr. Klimas is not saying deconditioning is causing ME/CFS. In fact, she is one of the few doctors who has gone to the trouble and expense to hire an exercise physiologist and who does exercise testing in her patients. She is VERY aware of the metabolic problems producing energy and she gets that from “real science”
In fact, Dr. Klimas is the only ME/CFS researcher I know of who is putting ME/CFS patients on an exercise cycle, and taking their blood before, several times during and after exercise. and measuring dozens of factors in their blood in order to try and figure out what is causing the inability to exercise. She and Dr. Broderick are producing models that will hopefully tell us how X factor leads to Y factor and Z factor and ultimately a relapse after exercise. They hope to use that data to create treatments to stop all that.
Her statement that deconditioning is present in some people with ME/CFS simply reflects the low activity levels present. It has nothing to do with the disease process and is not causing ME/CFS. As you rightly say, if it was that simple we would all be cured.
How do trials of exercise programs with NO objective clinical exercise assessments even get started? A metabolic test can clearly and easily show the CFS abnormal diagnostic pattern. The crossover from fat to carb burning = aerobic threshold is abnormally low. The pattern is diagnostic and unique. There is no need to exercise to exhaustion on day one and no need to do a re-test on day 2. Kinda odd that NO objective measures are ever obtained. Even the specified measures in the PACE manuals were largely ignored.
Great question! When actometers are cheap and effective: when hundreds of thousands of people use them every day with their fitbits et al. why doesn’t the UK, which has poured millions of dollars into their CBT/GET trials, use them to assess increased activity….It seems bizarre.
It’s not bizarre. The idea very likely was tested on a smaller scale by multiple researchers before and proved unpromising so another approach was needed… )-:
The only winners from ME/CFS being classified as a mental health disease are insurance companies and people that work for insurance companies.
Well, my condition fluctuates and I have marked relapses. I do feel I get deconditioned during bad phase, but exercise will make it worse.
As soon as ‘the lights go on’ I’ll be able, from nowhere, to walk or swim a little, and the deconditioned feeling, wobbly legs, breathlessness, pounding heart etc go very quickly, like a baby giraffe standing for the first time, and getting the hang of it soon.
When a crash comes, even if I’m fairly fit, it’s total and the collapse is not about conditioning, nor does being fit offer any protection.
maybe we do have increased risk of heart disease thru lack of exercise, but really not much point worrying until our general health can be addressed.
Where are all those recovered CBT/GET patiënts?
Amusing. It’s nice that the Lancet continues to publish fiction writing contests. No doubt their authors need the practice.
🙂
LOL “Take a short rest after the activity/exercise in a sitting position.”
And then I…. swing back into action, is that it? This more than any other part of it shows how futile it is to seek help from people who have no real world experience with ME/CFS. I spend 90% of my day in a sitting position. Not because I want to, I get up and stretch multiple times a day, but because I have no energy for anything else.
This very morning, I nearly collapsed in the kitchen while slicing veggies for a healthy breakfast. My husband had to take over because my back froze up in a stiff position. If I lived alone, I’d have had to go lie down on the couch and hope it passed so I could continue preparing breakfast. Or go hungry.
These people have no idea at all.
“The above program shows a person starting out at 10 mins a day, ending up with 30 mins a day after 12 weeks.” . That is way too much!!!! And it also says to increase by %20 each week! I’m living proof that going extremely slow is the key.
I have been sick for almost 8 years, needed a wheelchair within 10 months of onset, been completely bed ridden for nine months and mostly housebound for the rest. At best I was functioning between 0-30%of normal.
Ten months ago I joined the The CFS Health program and I have been making progress ever since. The emphasis is on restorative movement. After ten months my daily exercise routine is still no more than 5 minutes. I am now able to go for a 300 step walk every couple of days and I have not had a bad crash since Jan 1.( I used to crash from having a conversation alone) I started with two standing wall push ups daily and my coach told me it was too much!!! I needed a day in between to recover.
Then I progressed to doing gentle stretches laying down. Like two gentle stretches. I later added two exercises at one rep each. Now I am up to five reps per several exercise but only one set.
I started pedalling on a portable floor model 9 weeks ago. I started with 5 seconds daily and I have progressed to one minute.
For us to make progress our body has to recover between activities. Also for a few months at the beginning, between getting ready in the morning, or washing some dishes, I would lay on a yoga mat and do guided meditation until my heart rate was right back down.
I have tried everything, Valtrex, Famvir, three years of Valcyte. Seen the top specialists at the Open Medicine Institute and what I am doing now is what is working for me. I am living again and it’s incredible!, even my PEM is under control.
I also slowly started to read 5 pages a day and after 10 months I can read as long as I want. Same thing working on a jigsaw puzzle. Everything using my brain I used a timer and slowly my brain adapted. This year I started gardening again after almost 8 years. I set a 10 minute timer and I don’t do any more than that.
The less is more approach is really working for me and a lot of people I have met through the CFS Health Program.
I’m not here to advertise but just to share a method that is really working for me.
Wow….congratulations.Thanks for sharing your progress on the “less is more program”, and how we need to completely re-evaluate what “exercise” is.
Your progress reminds of me of Dan Moricoli – he started VERY low, used a heart rate monitor and over time improved greatly. It took great discipline.
thanks Cort it truely is amazing!
Laying down in the beginning is the clue. Whether you are doing Yoga or any other movement. Or at least it is with me.
Going very slow with increasing both mind and body activity *if and only if* one feels stable progress is indeed key. Choosing only a limited set of very basic “mind and body exercises” that one repeats again and again is key too. We have to relearn to do things from nearly scratch and gain efficiency in these exercises doing so.
I am patient but must admit that I am too impatient for going extremely slow so I settle for very slow at the cost of some increased risk. Thanks for sharing and please keep us informed.
Kind regards,
dejurgen
Well as a physio before bedridden for years obviously they haven’t even made sure that the participants get any support and ongoing individualisation. So the strategy is cheap but totally ineffective – what a surprise. As a patient group these are going to be people for whom support, advice and programme tweaking is essential. And of course the selection criteria is very broad and not helpful. But what we with CFS/ME get is they most simplistic programme to carry out alone after no real diagnosis, poor healthcare and institutionalised discrimination. Can’t understand why it didn’t work! The Lancet has lost all credibility by this total medical discrimination and lack of consistency in application of research principles and peer review. Shame on them all and the gullible doctors that simply swallow it all without independent thought.
And let’s look at the sequence of events in the vast number of us.
Active, busy, productive until a viral like illness or injury almost suddenly takes away our ability to do almost anything – including think.
I did pool therapy for over a year -3 days a week, never missed. I was so exhausted for the rest of the week that I eventually gave it up. It was helpful, to some degree, but never came close to solving any part of the ‘problem.’
Yes, I think insurance companies are ‘pressuring’ the research. My daughter is involved in biomedical research at a large university – so I have a little bit of more direct insight.
So I have pretty much given up on Western medicine. Working with a gifted indigenous Philippine ‘healer’ and actually getting some results. What a crazy trip. Hugs to all on this strange journey.
Thanks, Cort, for you continued expert analysis and updates.
yes this is flawed for sure.I think it is very dangerous to call this rral science or medicine. We have bad days and worse days and although we know some things that can make us worse, we still have no idea why other non eventfyl days make us sicker. We can not control our bodies even if the theory held any truth which it does not and definitely has not been proven. If we used this evidence to approve a drug for the disease the FDA would laugh at us. This disease is so complex this is an easy sill and dangerous answer. If I take a 2 hour car ride to doctor im sick for a week in bed. I have had 2 cancers from this disease. This is an insult to us all sets us back to pre historic. There are no good responses to this to argue any validaty for this. I think ill come up with a theory oh here it is playing scrabble with friends built up from 5 minutes to one hour over the next year will make me stop getting cancers from this disease, What about many of us who are bed bound or worse? This is a very serious dangerous path no matter how you rationalize this line of thinking.Please Cort this nidoes not help us only hurts us. We have gone through so much with this disease for decades we must be very very clear here that this is bad to even mention as our detractors will run with this as we have seen so many times in the past. BAD idea bad science bad for us dying everyday. the theory is bordering on nonsense. I would love to know how patients wre diagnosed and how much they improved Why wre no very sick patients used and I can gurantee you from having this disease its BS. Sorry but this will not help any one only hurt us so I apologize for my passion in advance
I wouldn’t trust ANY of the Drs. I have met to give me an “exercise program” I think this is horse or bull manure, it just stinks no matter how I view (or smell) this one. I cannot think of any other major disease (and this is definately some kind of autoimmune disease make no mistake…that is treated with so much un-“science.” After 10 years of it I’m more sick of hearing this same ol same ol about how if we just try to exercise more we’d be great. If only we all had more discipline and less “sickness behavior” or whatever the current in vogue thing is to call us, I can honestly say I have more discipline that I ever had when ill and you know what?, exercise (the kind a Dr. would prescribe…is …NOT…helpful!!!I don’t trust the Drs. anymore, I don’t believe in them, and I think at a certain point we all need to tune this out, I find it disappointing and hurtful. I want real science I want Drs. that don’t act so dismissive of every blasted thing that isn’t clearly defined in their medical journal and when they don’t know something don’t pretend or make us feel like we are hypochondriacs just because we are paying you for your expertise (if you don’t have expertise, stop pretending you do, it hurts the patient more…try to give a shit!) I wouldn’t trust ANYTHING outlined by GET until there is much much more understanding widespread in the medical community and acceptance of this being a very real biological illness, not the psychobabble we constantly are bombarded with. Thanks Cort for posting a variety of articles and even some of the personal techniques people use that are helpful…I don’t think you should post these ones (personally) but I’m biased as I find them so damn depressing and maybe some people find it helpful…I think its a slippery slope, especially if you are a newbie to this illness as you can make yourself alot worse by trying to positive think and exercise your way out of this (I’d be in a better place today health-wise if I hadn’t tried so hard to keep being “normal”,to push myself beyond my limits, and its real hard to determine those limits)I think for those who are very self disciplined and not walking around in a cloud of brainfog you could probably use a very cautious excercise plan…but i think the incremental itty bitty changes over time would be most helpful, I wouldn’t count on any of the Drs OI know to be helpful in this regard. I read some of the other posts and it’s true basic things like doing the dishes suck up energy ,and drs want me to go swimming…i want to say are you kidding me? Its like a very bad sad joke:(