- Question: When does a graded exercise study explain why graded exercise is not helpful for chronic fatigue syndrome (ME/CFS)?
- Answer: when it employs an exercise test with it.
Just as NICE was pulling back on graded exercise therapy (GET) a GET study was published showing why it doesn’t work. The authors did conclude that GET works for some patients but not others but an analysis of the study suggests that may have been understating things: the study may actually have shown why GET doesn’t work in almost all people with chronic fatigue syndrome (ME/CFS).
The first of a two part series of studies “The Impact of a Structured Exercise Programme upon Cognitive Function in Chronic Fatigue Syndrome Patients” used a graded exercise therapy (GET) protocol similar to that NICE formerly recommended. It was designed to test the idea that GET was able to enhance cognition in ME/CFS.
As with other GET studies, It was based on the idea that deconditioning was holding people with ME/CFS back. The idea was that gradual deconditioning over time made everything in ME/CFS more effortful and ushering in a vicious circle of continuing decline.
The difference was that a maximal exercise test was included to produce a heart rate the participants were supposed to match. In other words it was a physiological GET study – and that changed everything.
Home exercise was prescribed at least five days a week, 16 weeks in total, with the initial 3 sessions lasting approximately 10 minutes. The participants began with 10 minutes of exercise at 30–40% of their HRMax (maximum heart rate). That was increased to 20 minutes at a 10% higher HRMax. Stretching exercises were added. The intensity and duration was increased until the participants were exercising at 70–80% of HRMax for 40 min at least five days a week at the end of 4 months.
Results
It should be noted that these were probably the strongest of the strong. For one they agreed to enroll in a graded exercise trial. Secondly they agreed to do two maximal exercise tests.
Fifty-three patients did the graded exercise protocol. Of those, 64% completed it and 36% dropped out. Those who finished the study did appear to make some cognitive gains, which, however did not survive a test called false discovery rate (FDR) correction. While noting that many of the participants (50%) did not complete the study, the authors concluded the study supported the hypothesis that GET could improve cognition.
The exercise test results suggested that the sympathetic nervous system may have been putting the squeeze on the blood vessels of those who couldn’t tolerate GET.
The most interesting part of the study “Prediction of Discontinuation of Structured Exercise Programme in Chronic Fatigue Syndrome Patients” came when the researchers attempted to use the exercise data to understand why so many people didn’t make it through the study. They found that “greater sympathetic drive” in their blood vessels, a poorer reaction time on a visual stimulation test, and lower maximal heart rate levels were all associated with a greater risk of dropping out.
The patients able to complete the exercise protocol were able to reach, on average, a 93% of age-predicted peak heart rate during the exercise test, while the non-completers were only able to reach 86% of their age-predicted peak heart rate.
An inability to get your heart rate up to snuff during exercise is called chronotropic incompetence (CI). That reduced heart rate made it more difficult to pump blood to the muscles. Plus the “high sympathetic drive” may have been vasoconstricting or narrowing the blood vessels”. Either way, the dropouts had two conditions that may have impaired blood flows to their muscles.
Incompetence – Chronotropic or Otherwise
Unfortunately, the authors never dug into the past chronotropic incompetence findings in ME/CFS and, in particular, never referred to a landmark publication on that subject which had recently been published. The 2019 Todd Davenport/Workwell Overview “Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?” won the 2019 California Physical Therapy Association (CPTA) research publication award.
It was easy to see why the paper won an award. Dense and detailed, the paper noted the five different criteria used for CI, assessed the different ways to determine exertion level, examined CI in the context of other diseases, assessed the CI results in ME/CFS, etc. It also compared heart rate responses to exercise, single vs two-day exercise tests, evaluated the role gender played and estimated the effect cardiovascular impairment had on heart rate responses. In other words, it was a tour de force.
Right away, we can see how the graded exercise study might have gone wrong. An analysis of 22 ME/CFS exercise studies found that the healthy controls typically were able to hit 94.0% of their age-predicted maximum heart rate. People with ME/CFS, on the other hand, were able to hit only 82.2% (81.9–82.5%) of their age-predicted maximum HR.
Workwell found that on average people with ME/CFS reached only 82% of their age predicted maximum heart rates. Put another way they had 11 less heart beats per minute.
Note that the heart rates of the “ME/CFS” patients who were able to complete the graded exercise study matched those of the healthy controls (93% – 94%) participating in past ME/CFS studies. Given their near normal chronotropic competence, it was perhaps not surprising that they were able to complete the study. The bigger question was whether they had ME/CFS.
The patients who were unable to complete the graded exercise study looked more like the ME/CFS patients found in past studies. The dropouts hit 86% of their projected heart rates – just a bit above the 82.2% Workwell found typical of ME/CFS patients in past studies.
The GET’s study use of physiological markers, then, which I believe is a rarity for these kinds of studies, revealed something about the participants.
Being able to hit your age-predicted maximum heart rate matters. Workwell reported that getting to only 82% of your age-predicted maximum heart corresponds to eleven less heart beats per minute; e.g. that’s eleven less opportunities every minute to flood the muscles with blood during exercise.
That was during a single exercise test – a test which we know fails to adequately demonstrate the metabolic problems found in many people with ME/CFS. When the stress of one maximal exercise test is added to another one the day after, Workwell found the age-predicted maximum heart rates decline by about 5 more points in the ME/CFS patients on the second test – and either remain the same, or even increase, in healthy controls.
Workwell’s 2003 study, “Subclassifying chronic fatigue syndrome through exercise testing“, fleshed out the exercise intolerance and heart rate issues like no other study has, and introduced even more serious declines in predicted maximal heart rates.
Examining the exercise data of a large number (n=179) of ME/CFS patients, it found (using peak volume of O2) that about 11% of ME/CFS patients had no discernible impairment; 37% had “mild” impairment, 40% had moderate impairment, and 11% had severe impairment.
It turns out that “mild” was not so mild after all. While the ME/CFS patients with no impairment were able to achieve a pretty robust 91% of their age-predicted maximum heart rate, those with mild impairment were only able to reach 83% of their predicted heart rate. Things slid downhill rapidly from there. Those with “moderate” impairment were able to manage just 75% of their predicted heart rate, while those with severe impairment bottomed out at staggeringly low 67% of their predicted heart rate.
The authors pointed to four potential causes of the reduced heart rates. Interestingly, given that the heart rate is under sympathetic nervous system (SNS) control, they speculated that an inhibition of the SNS – something spoken of in ME/CFS – may be responsible. The potential causes included:
- Reduction of the ß1 and/or ß2 adrenoreceptors resulting in adrenergic receptor insensitivity
- Sympathetic fiber dysfunction resulting in decreased norepinephrine levels
- Diminished sympatho-adrenal-medullary activation causing smaller than normal rises in epinephrine
- Vagus nerve dominance blunting the effects of epinephrine and norepinephrine and heart rate increases.
Finally, it should be noted that an inability to reach normal maximum heart rates during exercise is just one of the many things which have been found to go awry when researchers have put people with ME/CFS on a bike and told them to pedal away.
Not everyone with ME/CFS has chronotropic incompetence (CI). Studies suggest that a wide variety of cardiovascular problems are found in ME/CFS. I know someone who has an excellent maximal heart rate, lung capacity and ventilation (they are apparently getting oxygen into their blood and pumping it out well) but they reach their anaerobic threshold very quickly, presumably because the oxygen in their blood is not being taken up by their muscles. Their functionality is very impaired, which shows up in other physiological measures.
Conclusion
First, it should be noted that graded exercise therapy (GET) trials are probably usually skewed to healthier patients. This GET trial was probably doubly skewed because it required that two maximal exercise tests be done. It was probably triply skewed because its own physiological data suggested that many of the participants either didn’t have ME/CFS or were in that small subset of patients who do not have cardiovascular issues.
Did 2/3rds of the GET study participants not have typical ME/CFS? (Image-by-Gerd-Altmann-from-Pixabay)
About half the participants failed to complete the trial – some because they feared doing the maximal exercise test. Of those completing the exercise test, 36% failed to complete the study.
It turned out that the dropouts had a significantly lower age-predicted maximal heart rate than those participants who completed the study. There was also evidence of increased sympathetic drive, which may have vasoconstricted, or narrowed, the blood vessels of the dropouts. This was quite valuable as it pointed at physiological reasons for the exercise intolerance seen in ME/CFS – perhaps a first for a GET study. Plus these possibilities have been brought up again and again.
Both of these factors could have impaired the amount of blood flowing to the muscles – making it more and more difficult to exercise as the amount and intensity of the prescribed exercise increased.
An analysis suggested that age-predicted maximal heart rates of the “ME/CFS patients” who able to complete the GET trial were near normal – and almost identical to those of the healthy controls in past ME/CFS studies (93-94%). That suggested that either these weren’t ME/CFS patients or they were in that small subset of patients with no discernible cardiovascular impairments.
The age-predicted maximal heart rates of the participants unable to complete the GET trial were quite similar, on the other hand, to the ME/CFS patients in past exercise studies (86-82%). They looked like typical, albeit “mildly” impaired ME/CFS patients. (Workwell’s 2003 study suggests that much greater impairment is seen in many people with ME/CFS).
When assessed in the context of past exercise study results, the GET trial suggests that GET is likely to be a failure for a typical ME/CFS patient because of the difficulty these patients have in getting blood and oxygen to their muscles. It also brings into question what kind of patients this and perhaps other GET trials have employed.
I note Fukuda were the criteria used, therefore this is research into fatigue which may include some people with ME but is likely to include those without ME who are captured by the broadness of the Fukuda criteria.
Hi Christine, are you from ME Advocates Ireland?
Good point. I don’t think it explains all of those very middling (or not ME/CFS at all) patients but it probably contributed.
Thank you for featuring this Cort, the purpose of this paper was to show that GET does not work. Bottom line = not fit for purpose, should not be recommended due to physiological profile.
I don’t know if that was the intention of the authors – they did point out a reason why it might not work in some patients – but I think you can make the case the study showed why it does not work in most.
This is very interesting.
My being HyperPOTS and having both ME and FMS and EDS etc…… I have higher NE levels with standing to put me in the HyperPOTS category and over matching the criteria for that. I also have variable blood pressure that can swing from high to low, very fast.
When I walk on a treadmill, my heart rate goes down. I can not get it up. But if I stand after walking and keep watching my heart rate it increases to very high. I have always said that I have to vasodilate my blood vessels and insisted that to doctors when they would try to have me take medicines to constrict them. I knew that herbs to dilate them was a much better choice and help for me with my POTS. Constricting my blood vessels made me soooooo much worse in every way. This totally goes against what is mostly said about POTS. But now, finally…..it is coming out that some subset types of POTS do better with not Constricting blood vessels. (But there is a fine line of not over dilating either.)
I think my using my legs in walking help with the pumping of blood and that allows my heart to rest and not have to pump so hard to move my blood and oxygen to my desired area of heart and brain. I also find fidgeting with my legs on an exercise ball, as a leg rest, helps with that too. Best ottoman ever. I have them all around the house. This isn’t a strong form of exercise, but it sure helps. And it doesn’t require one push themselves beyond capacity to help get blood moving.
Sad for those who went through this grueling experiment of a disaster. Too bad people wouldn’t listen and realize “we know our bodies best……we live in them”.
Issie
Yes, more and more evidence is coming out that there is too much vasoconstriction. Wirth and Scheibenbogen think that adrenoreceptor problems are to blame.
Heart rate goes down on a treadmill! So many autonomic abnormalities in these diseases
‘In fact, both the Fukuda case definition and the Reeves et al. empirical operationalization do not require several cardinal symptoms including post-exertional malaise, memory and concentration problems, and unrefreshing sleep.’
‘In fact, using the Fukuda criteria, an individual might not have any of the symptoms repeatedly shown to be core and critical symptoms of CFS, yet could still be diagnosed with the illness.’
https://www.oatext.com/the-implications-of-using-a-broad-versus-narrow-set-of-criteria-in-research.php#Article&gsc.tab=0
As you wrote Cort, those studies very likely include only the least affected. Reality is worse, much worse.
I read that the formulla for age predicted maximum heart rate is 220 – age. At age 39 I had the “choice” to do this dreathed combined CBT/GET “theraphy”.
Choice is a big word. Chances to be eligible for disability without doing all you can to heal are very slim. Without it, I saw no way I could earn enough money to pay for basic commodities like food and having a roof above my head making me dependent on the charity and help of others and that being enough. With it, I could live a decent basic live. But in order to have a decent chance to get it, I had to risk my health to deteriorate that much that it would ruin the bit of health I still had. I basically had to gamble with my health in order to make a chance of having access to basic incomme for survival. Without that, health is at risk too. It was being trapped between hammer and anvil.
I did chose to go with the program and hope for the best. I tried to both be safe yet give the program a real shot at helping me as I had tried different approaches and felt that was my last chance at maybe helping me despite the negative experiences of so many before me. After all, those running the program claimed that ALL who were willing to give it a real try did have meaningful improvement thanks to the program.
So, at age 39 my age predicted maximum heart rate was 220 – 39 = 181.
Before the program, I was able to walk over 2 km with a single stop on a bench in between. One month into the program I was barely able to get up my stairs, a single flight of stairs. When I said the physical therapist I was deteriorating as I could barely get up my stairs she replied: “Why do you think you get worse?” I was baffled. I said that that never was a problem before and now it took me 15 minutes and sitting and resting halfway in order to make it to my bedroom. How could that not be obvious? Yet, she kept finding alternative reasons for this change. Theraphy after all improved 100% of the patients who gave the program a real chance.
Later on, my condition continued to decline. A month further in the program my heart rate day in day out was locked roughly between 90 and 95 from rest to full maximum effort I could do without plain tripping over and smashing into the ground. When I started to fall off the treadmill more then once when walking at a snails pace at this heart rate approaching 95 BPM, I was gently advised to maybe stop coming to the program. I replied I would gladly do, if only a doctor of the program could attest that I did quit on their advice. I explained I could not quit by myself as that would have been seen by disability insurance as a clear demonstration of lack of will to do what is necessary to improve my own health, disqualifying me for eligibility for replacement income. Getting any written form that it would be on their advice I quit the program was impossible. So I had to endure. If not I had no other option but to depent on people being both willing and able to financially support me for life or risk ending up in the gutter and die there. Enduring it was.
Going true massive pain and brain fog, seeing my health deteriorate by the week I endured and finished the program.
There was no maximum effort exercise test during the program, but repeatedly fall of the treadmill while walking at a snail pace was likely very close to the maximum effort I could muster. I could no longer top 95 BPM at the end of the program no matter how hard I tried. I “succeeded” to complete the program at 55% of my age corrected maximum heart rate.
Gruesome as it sounds, that was just the beginning of my journey to hell. I kept quickly degrading by the week for two long months. I lost ability after ability, gained new symptoms by the week. By the end of that two mounths, I started to have increasingly loss of senses in my lower limbs and losing any control to move my legs for up to 10 seconds on a daily basis. This loss of control of my muscles and loss of sense in my lower limbs quickly started to settle in more frequent and at ever higher parts of my back and spine reaching to just below my shoulders. That is often said to be a bad sign of incomming paralysation.
I am crying writting this and so rarely cry. This was the beginning of my year in hell. Those two months of deterioration ended by a huge crash. I lost in it the ability to speak, the ability to move but more then a few meters even when doing an epic effort I never had done before in my life. I even lost the ability to feel pain for some time. I noticed all what goes with very very intense pain but I could no longer feel any. I just felt something like my sensory system being totally overloaded. I ended up in the emergency room. I had to learn to speak again in sentences. I had to learn to stand up from a chair again. I had to learn to walk around a corner again. I had not the least of clues on how to do it. I knew what I was supposed to do, but my body failed to do it.
I could barely understand more then a few lines of spoken text before losing track of what was said. I could barely read a few sentences before getting an all foggy mind. When reading more then ten sentences, the letters on the page started to float and swirl and soon I literally ended up with tunnel vision where I saw a blank middle and letters swirling around it. Man this is emotional even flashing back to that period.
I could not take care of myself and had to temporary move in with my parents to take care of me. They have a house on a single floor. With much effort I could move around the house. I had to plan however. I could not go from the kitchen to the porch without asking myself if I would have to go to the toilet in less then two hours. It would take me one hour before I would have the spare energy to travel the five or so meters from the porch to the kitchen and another hour of rest before I could travel the remaining five meters from the kitchen to the toilet. Doing it in anything less and I would risk another big crash.
Walk those few meters were an experiance out of hell. Utterly grewsome they were. I so so often prayed God to just allow me to drop death on the spot as it was far more then pure agony of the body. It was that and pure excruciation of the mind. It felt like any and all life was sucked out me while doing that. That was not life. It was not even surviving. I later called it distiled agony.
That, all of that was the reality brought on me by a fake theraphy that fails any grad level student science but was sold as world leading evident based treatment. That, all of that was the reality brought on me by resaearch outcomes that could never be achieved without seriously and knowingly fiddling with research protocols and statistics by any researcher worth that name.
As to the psychologist taking up the CBT part of this theraphy? Let me word it this way. The physical therapist was a real nice, kind and professional lady compared to her. The psychological tactics to carve the responsibility of failure of the theraphy on me and deep into my heart were plain apalling. As to me ending up “as the first registered patient to have gotten worse by thise theraphy”? The planned evaluation session, which was nothing more then filling out a questionnary after three months of training how to fill it in in a better way then the first questionnary at the start of the traject, somehow got postponed to three months later. By that time I needed a wheelchair, disabled people transport and was barely able to read nor comprehend the questions on the form so I had to skip that. I guess the next group of participants heard the same “All who are willing to do an effort for this theraphy see a clear improvement by it” BS and very false claim.
The silver linning? Those who read more on this forum know I came a very long way since. I now can write long and often very technical comments in English, a foreign language for me. I can walk up to 1 km without resting every few days and can live by myself again with only modest help. So, even if I did not reach the health I had before this disaster yet, there is hope for those who are in the same deep dark whole as I once was. When time is ready and we get more confidence in safety we’ll (Issie and I teamed up for more then a year now) reveal more of our ideas. Important for those suffering now: much of the worst damage I suffered seems to be not permanent, just very very hard to undo. Given better tools that means that many may see a reversal of part of their symptoms.
The other point of hope for us? CBT/GET is death! It plain is! All we see now is rear guard action and desperate futile fights to cling on. I’m glad to live and see this day! Let’s hope and pray for the liberation of the last sufferers of this terror.
Dejurgen, I feel your pain, hurt, distress and then joy of finally having liberation! You have a way with words to make one feel your distress and intensity. This should give more people hope to see how much distress you were in, how bad your health got and that you are climbing out of that hole you fell into.
To me it is amazing that you lost your ability to read and understand and that English is not your primary language. For you to be where you are now, and researching science with me, and explaining the technical aspects of what we piece together is short of a miracle and shows such work and determination on your part. That in itself shows that even those who have sunk to the lowest levels of health can get better. Even those of us with possible genetic complexities are finding some “purple bandaids”.
We, (Dejurgen and I) will tell some more of what we are learning. We have to test it out more and then get the “book” of it all compiled. There is a bright light at the end of the tunnel…….we can see it. There is more HOPE on the horizon.
HUGS Dejurgen, your amazing. Thanks for sharing……you help bring light and hope.
Issie
How do I subscribe to find out at the exact moment your and dejuergen’s stuff is put online?
Or which site/forums should I make sure to check regularly.
Thanks!
@manshadow, thanks for your interest in what we are doing.
Dejurgen and I are both only on Cort’s Healthrising forum. I had been on the DINET site for years before this. I do a few updates there but not many. (That is mainly on POTS for the DINET forum.) So I would say join the HEALTHRISING forum and keep a watch. We have a couple of threads open there that we add too every so often.
We are trying to work out between us tweaks to some things we both have issues with. But with me and my crazy, wonky genetics having to do work arounds. His response has been better than mine and we want to understand it well and where things can bottleneck and if there are better work arounds. We have both found that more is NOT better. We are both super sensitive to any sort of tweaking. But slow and low is a better approach.
We want to have science to back what we say and we want to have tested it well. It’s a work in progress. We keep adding new findings and connections. We think we have it complete and then something else comes to light and it gets even more clear.
We are working on it. We have been a great team together, compliment each other in our ability and knowledge. And as an added bonus we both have better quality of life and have become very close and deep friends. We both have joy every day now and can appreciate the little things in life. That’s what we hope to share with others. We may not can “fix” it all the way, but we can apply some nice “purple bandaids”.?
Issie
Dejurgen is our technical voice. He is better at that than me. He has chosen when to share what we share when he feels it fits the subject. So the majority of our efforts are on these blogs. You can look under Google and Healthrising and put our names in and it will pull up a lot of what we have shared.
Dejurgen, I am so, so sorry you had to go through this. It is just heartbreaking.
And the fact that you had no choice (because you really didn’t, as you’ve so well explained) but to be put through this entirely unethical (and should be illegal) program qualifies as torture. It’s a travesty of a “therapeutic program”.
Your description echoes what I saw in the ME documentary “Voices from the Shadows”, with severely ill ME patients forced into extremely harmful exercise. I was deeply upset after watching that film. And shame on them for not stopping when they saw your physical collapse before their very eyes.
Your eloquent narrative of your experience should be published (and now it is, here) and is so good it should be made available to policy makers.
It’s a bit of a miracle that you have managed to inch your way (almost) back to where they were before these reprehensible people got their hands on you. I can’t imagine what you’ve gone through to get back, but I’m so relieved for you that you did – through your own sheer perseverance and the help of your parents.
You’re such an asset to the ME community – thank you, and thank you for sharing your painful story – it can’t have been easy.
So well said Waiting…
dejurgen, what a nightmare. You’ve obviously made such monumental effort to improve your health since then. I’ve been thinking for years now, that we marvel at and applaud Olympic athletes etc but there are also people who put in the same amount of effort (like you) just to survive and they are rarely recognised.
I’ve also been thinking that these horrific stories of abuse by so called ‘professionals’ may be better and more acurately portrayed by articles in the press, films, novels and plays like A Demon on my Life, than by the professions themselves.
I have encountered the dark side of the world of therapy and I would liken dealing with the more authoritarian elements of it, like I imagine having a run in with the secret services would be. I wrote an account of my experience and I called it ‘Inside Out’ because that’s what it felt like. The therapist put such unrelenting pressure on me to conform to her will and I became so exhausted from arguing, she succeeded in breaking me down and turning me inside out, or more accurately outside in. I couldn’t leave her group because it was an assessed and mandatory part of my counselling/psychotherapy training. So she had the power and could have failed me if she chose to. I had invested so much in the course already (this was in the 3rd year of a degree) I didn’t want to give that all up.
I think there’s a huge issue with safety in therapy. The therapy industry are only beginning to acknowledge it. Few people understand it but I made my way out. And so did you.
Take care of yourself it’s not easy to go back over it all.
And so well said (as well), Tracey Anne. 🙂 I notice we posted at the same moment – and made such similar observations.
I’ll bet we are not alone in what we think of this – about what Dejurgen survived and about the fact that he was forced into a position where he had to survive it at all.
How many others either went through this or were terrified of having to go through it?
So true both Waiting and Tracey Anne. And get this…… one of the very prominent Clinics in the US had a similar program for POTS “children”. And when it came out, those of us older ones with it cringed. We were very, very verbal of the abuse and forcing children to go through this. Some claimed it helped. Some got way, way worse. About that time they were saying we all had small hearts and we needed to exercise more.
My first visit to this Clinic had a neurologist tell me I was “acting out” and it was all in my head and she wouldn’t order any test because it would encourage my “acting out”, medical term is Conversion Disorder. She made me go talk to a psychologist to “evaluate” me. From there, I went to an internist who agreed I needed a through work up. About 16 doctors later and seeing a cardiologist, they did a tilt table test and found HyperPOTS with high NE levels. (That was a visit of 3 weeks long, every day of doctors and test. I had 2 more such visits of 2 weeks each. Total about 30 doctor visits of all different types doctors.) And Rehumatology found EDS and FMS. And Immunology found MCAS. And a new neurologist found neuropathy and muscle weakness. And the list continues. Almost every doctor they sent me to, past that first doctor, found something wrong and science could prove it. And I was just “acting out”. Now this was in the early days of POTS. It was not well known and subsets were not even determined. MCAS was not known about, (until I handed them a book of my research). Those days were days of discovery for both doctors and patients. I’m thankful to this Clinic because I got my DXs there. I even recommend going there for DX. But this experience was not a good one. But that, hopefully, won’t happen again there. I’m not a very quiet person when I feel the need to express myself. (Though I’m a pretty quiet person, believe it or not.) Went to the top of the Clinic…..that one did. Had round table discussion and my records had pages of additional notes added of disagreement, things removed and all the other doctors, I saw past her…..stood up for me! Thanks doctors and you know who you are.
But how sad, these children were being made to exercise. The same protocol as this GET program. Yeah kids are deconditioned with this too, as are adults. But if they could run and play, go to school, go to dances, interact with their friends…… you bet they would. And exercise is not going to “fix” that. Sure, we need movement, we need to be able to go from the table to the porch and to the bathroom……but forcing one to exhaust themselves is NOT the answer.
Sorry, getting mad. I went through that here in the States and I wonder how many others before me got dismissed. They even offered me $50 to be in a physiological group to evaluate what happened in my life to cause me to have these symptoms. I told them it was real, not in my mind, and I didn’t need their $50 or their lack of concern to find the “real” cause. How many people had POTS, MCAS, EDS, ME/CFS and be given a mind altering drug or a tranquilizer. Ugh! UGH! UGH!
Dejurgen is very special and his endurance is remarkable. His goal in life is to help others find a way to have some of their symptoms covered over with a “purple bandaid”. We may not can “fix” it all the way. But we can cover over the boo-boo and make it feel better. And have better quality of life. I for one sure do appreciate him. I’m glad he has made such improvements and over the last year, we can both see him soooooo much better. Every day, he can find something of joy now. YAYYYYYYY! Keep going Dejurgen. You help keep me positive.
Yes, I noticed the exact timing too, Waiting! And Issie the ‘therapist’ I was in dispute with said to me, in the group ‘look how you’re acting out’, ‘look how you’re blaming others.’ I was surrounded by psychotherapists but there was no one I could turn to for help.
It’s only in the last few years that I have found a professional organisation that would listen to me. I submitted this last complaint in 2018 and it’s still ongoing. The Institution I trained in, are being very defensive and choosing to undermine me, instead of looking at my concerns.
There’s a great book called Against Therapy by Jeffrey Mass on. On the front cover, they wrote – Warning: Psychotherapy may be hazardous to your mental health. I think it should be included and studied on every mental health training course. What you went through Issie and Dejurgen and Eva, from the Get This blog and Jennifer Brea, Andy from the Get This blog, Sophia Mirza and Lynn Gilderdale and all the others who have suffered from the inhumane bullying that has occurred over decades.
I’ve spent the 13 years since I was essentially bullied into submission (with serious long term damage to all aspects of my health) trying to figure my experience out and find someone to listen to me. I think I might have found just a very small group of psychotherapists, who may be helping me raise my concerns. We’ll see…
My heartfelt good wishes go out to anyone who has been tangled and trapped within the web spun by an individual who should really know better. I do believe a revolution in thinking and approach is on its way but it’s very slow and having got a taste of power some ‘therapists’ will be very unwilling to relinquish their domination of vulnerable people.
Tracey Anne, it is so sad that supposed professional people do this to those seeking answers and are desperately there for help.
I learned that this neurologist and the psychologist were together trying to write a paper to say that ALL people with similar symptoms as me, had this same “disorder”. (I knew how to get into medical papers and read rough drafts before they are complete. They are actually on the internet and can be revised before being published.) In that paper…..ALL the symptoms of POTS, EDS, MCAS, ME/CFS were there. They were also studying Dopamine and its affect on alcoholics and those with compulsive disorders. They were lumping even a known chemical imbalance into the mix and saying it could be “therapy talked away”, or “medicine fixed”. (It doesn’t have to be medicine, some combination of herbs work for neurotransmitter imbalances too and don’t change other body chemistry so adversely.) When I saw they were in cahoots with each other, I had their picture. They were trying to make a name for themselves at the risk of people who had serious, science provable illness. That to me, is…….absolutely not looking to the welfare of the patients, to exhaust every possible cause, before sticking a physiological label on them that is forever damaging and sooooooo untrue. As she refused to order even one test for me. It was even in her paper that doing testing would encourage belief in the patients that they had something medically wrong and they would continue to even “act out” more. After my fighting her and this going to the very top of that clinic……that paper was changed. I don’t know if it was ever published. But I had my day “in Court” and won.
I was soooooo very sick then. Was in a wheelchair and couldn’t stand from a chair and was having severe tremors. I had been sent there by a local small town neurologist after having worked with me for months, and my getting worse. She thought I had Parkinson, but treatment didn’t help. Then she thought I had Multiple System Atrophy, as things were getting worse and she felt this larger Clinic may could figure it out. She had gone to neurology seminars and talked to other doctors about my symptoms and what she had tried. She had not seen anything quit like it…..but, she knew it was “real”. I went there thinking I maybe had 10 years to live and was told I was “acting out”, and there would be no testing. Unbelievable!!!!!! Such was the early days of what was considered rare and unknown….. POTS and its other illnesses, that can go along with it. Autonomic Nervous System (or Automatic Nervous System…..not under conscious control – full body affecting) Disorder.
Nearly all the illnesses that we speak of, on this forum, “seem” to overlap or are also intertwined together. WE (Dejurgen and I) are finding some of the WHYs for this. And there are some things that we are still trialing and tweaking, that seems to help us. And it doesn’t take a doctors prescription pad to do it either. We both have improved in the last year. Neither of us by any means are “well”, but we have some nice bandaids to make us feel better, have more functional lives and give us enough HOPE to keep going.
It’s so frightening being blanked when there’s very serious issues going on. From my point of view, I know that there are fundamental systems in my body that I am now consciously aware of – because they’ve gone wrong. What this reminds me of, is my body going into a different gear. We had an ancient Land Rover growing up and it had a four wheeled drive it could be put into – I feel a bit like that – I’m in a different gear and I don’t fully understand what’s going on – some things just do not happen automatically anymore and my immune system is definitely deranged.
Anyway considering the medical profession stated for years that there was no evidence that smoking cigarettes caused lung cancer and that multiple sclerosis was ‘hysterical paralysis’, it wouldn’t be wise to listen to everything they say. So, I think the only way out of this mess is by good, sensible, reproducible science and by listening to patients/clients.
@Tracey Anne, that is true. We can’t trust that doctors will know all. That is not possible, especially with illnesses that are not well known and protocols are still being developed as the complete WHYs are not known. Its good that science is advancing and we are getting more of those WHYS.
I think we all have been down a hard road to our DXs. Lots of uncertainty, wrong DXs, unkind and unfeeling people. And even doctors trying to fit us into a mold with sharp sticks and trying to make us fit there. But in the end, as time goes on……more and more is learned. Thankfully some of these wrong approaches and wrong attitudes are being broken down.
And having other doctors notice and stand up for us with a round table “Court”, as I had, sure does help make those changes and adjustments possible. I’m forever grateful to those doctors who stood up for me and pushed as hard as I did to figure me all out. I received some, considered at that time, rare DXs. And I had a place to start and work on for trying to have more quality life. I was going to have a life and not die in 10 years, as was thought. Well passed that 10 year mark. Yes, I’m a true longhauler. Been at this a lot of years.
But I’m way better now than I was then. And better today than I was a year ago. I may be a year older in age, but I’m a year younger in health……so to speak. My worst thing is ME/CFS at the moment and that has its ebbs and flows. But I sure have HOPE!
I thank Dejurgen for helping me on my journey! His help and insights and not giving up. We have sure had a fun time learning together.
All keep “Holding on Tight”!
Issie
Looks like my story DEjurgen. It cost me years and years to feel even a little bit better after GET and CBT. I also was ‘forced’ by an insurance company. I think they destroyed my abillity in that time te being better. And they still want blame the victim.
“I think they destroyed my abillity in that time te being better.”
I more and more believe that if an ME patient can maintain at a stable level of health, how low it is, that he has to have some remaining self-healing capacity. Without it, I believe he would keep on deteriorating.
The real challenge is to find ways to increase that very minimal capacity at self healing bit by bit. So consider your chances to improve health greatly hampered but not totally lost by such destructive therapies.
There may be hope when better treatment options become available.
Thanks all for the kind responses.
@Tracey Anne:
Many students chose the field of psychology in order to try and sort out their own deep routed mental issues. Most of them fail.
Those that do graduate while not sorting out their issues during their study are often very intelligent. One way to be able to keep standing strong while having bad issues with self esteem, mental balance or mental sanity is to build a rigorous framework of false psychology based believes, unwaivering dogmas and very strict self discipline to keep reinforcing that artificial construction from crumbling.
Psychologists chosing to take care of patients need an extra strong mental stable base as they are under continued mental pressure brought on to them due to being surrounded by patients with mental issues.
If physchologists treating patients are not fairly mental stable by themselves but are one of those psychologists with deep rooted mental unsorted issues, then they need to be very skilled at building them that protective framework they vitally need to keep themselves any resemblance of mental stability. That makes them exceptionally skilled at and often willing to go to far lengths to protect that facade they need to remain functional themselves. Anything and anyone risking to upset that false self image is at serious risk.
So, Tracey Anne, when being victim of a very harsh treatment of psychologsists question the sanity of the therapist, not yourself. A good therapist never goes on a destructive spree.
Thanks dejurgen, I appreciate your support. It’ll be interesting to see how my complaint concludes. I was thinking today, in response to this highly charged discussion, that there are some very decent therapists out there but sometimes I think they’re a bit too ‘nice’. The more ethically minded need to speak up. I’m hoping that my complaint, if successful in raising my concerns, might actually liberate some of the gentler, more approachable counsellors/psychotherapists from the grip that the authoritarians have in the area. I’m not against therapy completely, I just feel that safety issues need to be highlighted and acknowledged. I used to say to people – assess going to a therapist, like you would assess having your haircut. Does the therapist/hairdresser/barber suit you or not? People can be intimidated by therapists and the worst ones will take advantage.
Also I wondered how you were?
That is the most stunning account of the ravages that GET can cause I have ever read. It’s horrible that you had to make that choice. Truly there was no way out for you. Such was the state of things. Hopefully, now that NICE is backtracking on GET others will not have to go through this. Thanks for being willing to share your experience so poignantly and completely so that others can get the cost these approaches can produce.. Wow…
Dejurgen….. it took a lot out of him to share this. Caused him to revisit what happened and how he got even worse in his health, what he lost because of it. He doesn’t want others to go through things as this. He searches endlessly to help find WHYS and reasons and then help find solutions to those WHYS. He has a goal and much determination. He wanted you guys to know that no matter how far one sinks in these illnesses, there is always HOPE for some amount of recovery.
He is exhausted from sharing and revisiting this horrible experience he HAD to endure. But ENDURE he did. He is on his climb up. ☀️ The sun shines and another day dawns. ?
I’ve just braced myself to read again, Dejurgen’s account of what he described as ‘distilled agony’. It’s an agonising read. But it’s also such a detailed expression of hope for others, from such a generous person. I was just thinking this morning that we also have Whitney Dafoe’s book coming up, early next year. All these personal accounts add up as a powerful contra indication to the prevailing attitudes towards vulnerable ME/CFS patients.
Issie, you’ll most likely have contact with Dejurgen before we do. Please send him lots of love from me…
Thanks Tracey Ann, he feels everyone’s love. Thanks for sending yours. He appreciates all the words of kindness and HUGS. I’ll pass it a long.
He truly is a very kind, caring, lovely, very rare individual —- shinning bright in a world of much darkness.
I’m thankful for him!
Issie
Dejurgen, you may have discussed this before, but I missed it. How did your illness begin; what year?
Betty
Hi Betty,
Early 2019 I started to write the “Me current improvement” series, with part 2 and 3 mainly discussing my health history in detail.
I postponed writting part 4 till now. I hit an unexpected snag. The next thing I did left me being able to do only about 40% as much as I did before but at the same time I dug way less deep into my reserves. I estimated back then that my body stopped producing the truely excessive amounts of stress hormones that kept me going even that little when I was at worst. But things weren’t clear so I couldn’t write about ongoing impovement at that point.
That prove to be right, it took me almost half a year to be able to do as much as before that latest improvement but now I could do with way lower levels of stress hormones. I had started growing a buffer and would recover way faster when overdoing or hitting PEM from then on.
Since then I have had several of those epsiodes of my body “puting myself in lower stress hormone levels and temporary allowing me to do less then before”. It’s like it decided I now could function minimal enough at far more reasonable but still high levels of stress hormones.
Since then I also teamed up with Issie who became a deep personal friend but also helped piling up tons of new information I need to sort through. It’s been a period of much new learning for both of us. Her knowledge plus mine adds up to be far more then the sum of it’s parts. It’ll take some time to sort through most of the backlog and get safety up enough but we’ll plan to work on getting information out. Dates are not set in stone yet however.
https://www.healthrising.org/forums/threads/me-current-improvement-1-what-to-expect-safety.6106/
https://www.healthrising.org/forums/threads/me-current-improvement-2-who-am-i.6107/
https://www.healthrising.org/forums/threads/me-current-improvement-3-diagnosis-time.6115/
Hi Dejurgen, Thanks so much for sharing the links about your illness progression. I guess what I wanted to know is what year did you get mono?
Just before getting 20. Now I’m in my forties.
Thank you so much for your perseverance through hell and your willingness to share the experience.
When I am reading about these stress tests, I do wonder where I fit in.
About a year ago it was determined that I needed an inclined bicycle stress test before breast surgery. My HR is already quite high, usually around 100 BPM when I am at the doctors–which is usually a stressful situation anyway. I’m thinking, ‘What makes for high heart rate variability, especially since it is already very high?’ I know my HR is uber excitable, like a loose accelerator pedal.
During the test I was asked to pedal so my heart rate was around 14O (if I remember correctly) and not above 150. They put extra tension on the pedals. I had to keep slowing because my heart wanted to go higher. I was told to pedal to exhaustion which was around 15 minutes. Afterwards I was asked if I experienced any heart pain, palpitations etc.–which I hadn’t.
The real problem was that I felt I couldn’t get enough oxygen and that made me stop. I’m not sure what this means in terms of where I belong in the ME/CFS categories.
I find that some VERY slow increases in exercise over time do help me build a bit of endurance.
I have a fatigue level of around 7 which only vaguely responds to pacing. Often I feel my energy level suddenly drop. I most definitely have PEM and take a one to two day recovery period after my energy transgressions (which are difficult to predict). I would consider myself moderately affected. So what do studies like these mean for someone like me? Anybody else similar?
@Nancy B., if I remember right, you are also HyperPOTS. I think a lot of us with this have different things going on and we don’t fit the regular category of what is considered POTS. Even the approach of our treatment is FINALLY, being discovered it should be different.
My sister and I both were in a genetic study for ME/CFS. My sister does not have POTS but OI and her kids all three have POTS. Even though we shared a whole lot of the same genes, the expression of them was quite different. My sister having always complained of her fatigue and me of pain with fatigue. I had always thought it was from POTS, FMS, EDS and other things that went along with it. But my Mitrochondria was near none functioning on sooooooo many levels. (Before my last ME/CFS crash, I could push through better than my sister. But, with that crash a lot more showed up.) Of all study participants I was in the lowest function at a 20% level. So one of the very worst in the study.
I think a lot of what we have can depend on our complexities, subset types, and how our body responds under certain circumstances. Not all respond the same. Doesn’t make it any less or more……just different. We can’t, don’t and won’t all fit into the same box. And the “fix” or “purple bandaid” will be different for each of us. But there are some “true to us” underlying issues that can be tweaked. The response to that tweak will be different for each one person too. And it may take a different work around of the same pathway, to have a successful response.
I have PEM very bad too. But my sister is a lot more physically “able” than me. She doesn’t appear to have EDS, but does have a FMS label. And her kids have EDS. So a whole lot of issues are showing up in genetics.
@Issie, thank you for your long and considered reply. I guess you are telling me what I often tell others; each person is an individual with their own medical idiosyncrasies. Still I wonder about sub-groups and what each might mean.
It’s very interesting to see the comparison of you and your sister–especially when (overt) EDS is involved. I’m like you with pain and fatigue–the fatigue being most bothersome. I probably spend an inordinate amount of time looking for any color of ‘bandaid.’ This search led me to recent autonomic testing which, unfortunately only revealed ‘tachycardia’ and not POTS–never mind I did meet the criteria with my home monitoring. I do know that POTSy symptoms can come and go.
Also interesting that you mention vaccine issues. When I had my 14 month problem (leg weakness, swollen lymph glands, fatigue, vertigo and more) it was somewhat after a live polio vaccine I received prior to my trek into a primitive region of the Himalayas. I was in my mid-30s then but previously each time in my life I had a flu, I always had an extended recovery–with post viral symptoms. I suspect my immune system had more and more trouble recovering with each insult.
All this has me greatly worried about Covid vaccines as I am sure many of you are too. I recently got a flu vaccine and thought my only reaction was an enormous bruise and a sore arm. Here it is about 2 weeks later and I am in an extended fatigue flair. After all your comments, I do wonder…
@Nancy,
Issie and I disagree on vaccines. She had a rather poor experience with it to say the least. She however also has diagnosed IG_something deficiencies, making it very hard for her to fight off some things.
In general: can people with ME expect to have some clear symptoms after Covid vaccination? Chances are it will be quite similar to their reactions to flu vacciantions.
But you wrote it yourself: “I was in my mid-30s then but previously each time in my life I had a flu, I always had an extended recovery–with post viral symptoms.”
The diseasse itself upsets the immune system a lot too and likely even more.
With Covid it’s fairly simple IMO:
Chances are high that getting Covid will upset your imune system (a lot) more then the vaccine itself. Covid itself is one of the most contagious virusses humanity has ever seen.
So not having Covid vaccination will require a VERY VERY strict self isolation from people for over at least a year longer then the ones who take the vaccine and even then you can’t bet to be safe at all. Having ALL people you ever meet taking vaccination helps some.
So my plan for now is to try and further build my health and recovery potential till a vaccination is available (to better tolerate it). In addition, taking Issie’s concern into account that some vaccines use new technologies who can give unexpected side effects, I think I will look if there are comparably succesful vaccines based on old technologies versus new ones so I likely can have the same backlash as with the flu vaccine.
When in doubt, waiting for the first reactions of ME patients and having a Healthrising Poll might be a good idea.
@Nancy, hard to say about the vaccine. It was either polio or measles vaccine that we reacted to when very young. (Not sure which it was. Cant find my records.) But we all feel it was a turning point to our health.
And my dads reaction and getting Gillian Barre from the flu shot caused him to need infusions to try to stop its progression. It can actually cause paralysis and do serious neurological damage. He had all that going on. They knew the vaccine caused it.
But as I mentioned, I do have Hypogammaglobulinemia or extremely low IGG levels and had been told I needed IVIG infusions, which I decided not to do. (And my doctor agrees to that decision too.) So I have to be very careful of getting exposed to things as I may not can fight it off.
With the autoimmune response of my dad along with my known autoimmune issues……I was told not to get vaccines as I could react as my dad did. My sister also was told to not get vaccines. Both doctors told us we had high chances of the bad reaction with wonky genetics.
So there is a little more clarification and why I can’t take vaccines.
I have other questions about vaccines too. But that is a highly charged subject and I won’t go there. Each person needs to do their own research and make a very informed decision based on how it works, its intended response and how that is expected to work long term. Question safety testing and long term possible consequences. But that is an individual decision for each person based on their own individual chemistry and circumstances.
I for one, can’t make that decision for anyone or even make suggestions one way or the other.
I’m reading all your comments and finding them very helpful to see what symptoms you’ve had. I wonder if anyone has had flare-ups of ME/CFS after vaccines. I had a 6-month CFS/ME reaction to the Shringrix vaccine in 2019 and am now plunged into it again for 2 months so far since my 65+ Fluzone vaccine.
Since having ME I had once a flu vaccine without flare up, once with a weeks worth of flare up and once with about a month and a half worth of bad flare up. The lower my health when having the shot, the worse the flare up. It seems to interfere with my immune system.
I now only take a flue shot when signs are it will be a more dangerous variant or be widestpread that year. It’s weighting your risks between a big risk to have a hopefully manageable flare up and a small chance to be likely hit far worse when catching the actual flu.
I feel that a vaccine caused issues with my sister and I and a male friend when I was 8 years old. We got ME/CFS “symptoms” and was so sick we couldn’t raise our heads from a pillow and had to be carried as we couldn’t walk. We missed almost a year of school. Long story, short. We all have FMS and ME/CFS DX now. I also have Hypogammaglobulinemia and have been told NOT to take vaccines. My dad got Gillian Barre from a flu vaccine. Both my sisters doctor and mine said chances are real good we would have the wonky genes and have that response too.
One of my older brothers, Bobby, apparently had an extreme reaction to his vaccination when he was 8 months old. He was seen to be so disabled by this that it was recommended by consultants that he be put in a care facility, which sadly did happen. We are an atopic family, with all sorts of immune issues.
It’s terrifying that proponents of GET have moved on to doing maximal exercise tests.
While it’s terrifying to think that this group, in particular, is doing this if they had done exercise tests from the beginning I think we would have had a lot less GET. The first GET trial did use exercise tests. I don’t know if any others until this one did – I don’t have a memory of that happening – and when this one used it it didn’t help the GET movement much. Hard physiological data wins out in the end…If only we’d had more of it and how odd that we didn’t really given that these were exercise programs. Was the fact that we didn’t a red flag?
Thank you so much everyone for your comments! It’s so helpful, especially today, to know again that I’m not the only one. Special thanks to Dejurgen for making the extreme effort to explain his whole journey. I had a very similar journey (especially grateful to read about the written and spoken language failures), that almost cost me my life in my 20s, but I’ve been too afraid of the PEM to write it all down. Also special thank to Cort for his extraordinarily supeheroic efforts on this website. Don’t know what we would do without you!
For me I just thank the gods that I never had to go through what DeJurgen and you and others have gone through. My PEM symptoms while very troublesome are much less severe. To think we almost lost DeJurgen’s great mind to a GET program!
I just want to say Hello Kelly 🙂 I’m a bit overwhelmed by all this – I only ever write things on my phone (unless I put a link in, now I know how to do them!) because I find the larger computer screen is a bit too overbearing. I have to compartmentalise my life (less so now) to a certain extent because I find the thoughts and feelings that emerge, can be too destructive to my overall health. I try to deal with issues as I need to. I don’t believe I’m in denial, or suppressing my feelings – I simply can’t function if I become overrun with fear, frustration and fury. It harms me and is futile. It’s also energy guzzling. Anyway, I send you warm wishes. Tracey
I am so grateful to all who post here, and especially about vaccine reactions. Thank you !
It’s like song that stays on repeat for years on end. This story is playing as long as I am ill (which is a long time). I am so tired of hearing it over and over again.
Frustrating that they didn’t use Electroencephalogram (EEG) before and after the maximal exercise test to measure the impact of PEM on brain function.
which provides objective information about how the body and brain are performing. Looking at brain function after exercise stress provides measures of voltage and reaction time in the post exertional state. This test regime is less onerous than the 2 day CPET test protocol as only 1 CPET (maximal exercise test ) needs to be carried out.