-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Few physical differences found between healthy individuals and those afflicted chronic fatigue syndrome (sciencenordic.com)
- Thread starter Adster
- Start date
HowToEscape?
Senior Member
- Messages
- 626
You can't find a thing when you don't know what you're looking for don't have the ability to see it. Whatever is up with us does not show up on standard tests, and the mechanism of malfunction is unknown. Perhaps it is due to a currently unknown process, one which happens within a cell or mitochondria, or in an interaction of nearby elements that does not involve placing something in one's bloodstream.
Imagine a civilization with no concept of electricity trying to troubleshoot a set of battery-powered flashlights. Some work, some are dim, and after a while of fooling with the dim ones to improve them, they go dead. Take one apart and it seems exactly like the good ones. The dead ones obviously must have been cursed, the solution which can't be disputed is to burn the bad lights to drive their demons out and find who is the local witch.
If you'd handed them a voltmeter and explained that it measures "battery magic", they'd be at step one, not knowing how to make electricity but at being somewhat able to measure it. But with no concept of electricity, much less voltage, they will never build such a meter.
* (for the analogy to work, disallow cutting open the batteries - they're vastly simpler than living cells).
Imagine a civilization with no concept of electricity trying to troubleshoot a set of battery-powered flashlights. Some work, some are dim, and after a while of fooling with the dim ones to improve them, they go dead. Take one apart and it seems exactly like the good ones. The dead ones obviously must have been cursed, the solution which can't be disputed is to burn the bad lights to drive their demons out and find who is the local witch.
If you'd handed them a voltmeter and explained that it measures "battery magic", they'd be at step one, not knowing how to make electricity but at being somewhat able to measure it. But with no concept of electricity, much less voltage, they will never build such a meter.
* (for the analogy to work, disallow cutting open the batteries - they're vastly simpler than living cells).
Learner1
Senior Member
- Messages
- 6,305
- Location
- Pacific Northwest
Exactly what blood tests were run in these patients that found so little? I have pages of abnormal tests, but only a few items on CBC/CMPs are ever out of whack...
Did they look at immunoglobulins, NK cells, PCRs for infections, thyroid or adrenal or sex hormones, antioxidant levels, nitrotyrosine, amino acid levels, etc.?
And they forgot to mention the CDC consciously removed the CBT/GET recommendations from their pages last year...not just that they don't really mention them strongly...
And thank you, Google Translate!!
Did they look at immunoglobulins, NK cells, PCRs for infections, thyroid or adrenal or sex hormones, antioxidant levels, nitrotyrosine, amino acid levels, etc.?
And they forgot to mention the CDC consciously removed the CBT/GET recommendations from their pages last year...not just that they don't really mention them strongly...
And thank you, Google Translate!!
IT seems they looked at the patients before they developed me/CFs, to see if they could tell who would get it, and who would not. And they couldn't find anything to separate the two groups.(but very little said about what they checked)
But it's big difference in how to read the results, depending on who you ask.
And it seems both sides of view are allowed to speak in the article:
The results show some small differences in the immune system between people who regain their health and those who develop ME/CFS or other chronic fatigue after mono, but not enough to explain the dramatic disparity in symptoms.
Professor Vegard Bruun Bratholm Wyller led the study and believes the results support the hypothesis that ME/CFS is due to a hypersensitivity in the brain. This leads to signals from the outside world being over-interpreted because the nervous system is on continuous high alert.
Professor and paediatrician Kristian Sommerfelt, on the other hand, believes that the results only show that the participants with a lot of symptoms after their bout with mono more often develop chronic fatigue, and in some cases chronic fatigue syndrome.
He notes that brain hypersensitivity was not investigated in this study.
Almost half developed CF or ME/CFS
Wyller and his colleagues recruited a group of about 200 adolescents between the ages of 12 and 20, who had just been diagnosed with mononucleosis. In addition, they included a healthy control group without the illness. Researchers followed up on both groups six months later.
The participants completed a questionnaire on their symptoms, and the researchers ran several different tests that could reveal something about disparities, for example in the immune system or the hormone balance.
After six months, 91 of the participants had developed chronic fatigue. Of these, 26 met the so-called Fukuda criteria for ME/CFS. Slightly fewer – 19 participants – had ME/CFS according to the strict Canadian consensus criteria.
Thinks the brain rules
"Overall, this suggests that ME/CFS and CF are about how the brain perceives the body, not how the body actually is," Wyller says.
He compares this with chronic pain. “You can have a lot of pain without finding anything wrong in your body. It's about how the nervous system responds,” he says.
The research on pain has shown that the nervous system can change, for example after a physical injury, so that it begins to perceive signals differently. It simply rebuilds so that certain signals – like touch or heat and cold – are suddenly perceived as pain instead.
A lot suggests that the pain level you feel may depend at least as much on how the brain responds to it as on what kind of stress you are physically exposed to.
Other studies have shown that normal fatigue after exercise is also controlled more from the brain than from the muscles. When top athletes give their all and collapse on the goal line, the muscles in fact still have strength left, but the brain says stop.
Wyller believes similar mechanisms are at work with ME/CFS, where the brain is somehow suspended in perpetual high alert, and normal signals from the outside world get over-interpreted.
He believes the lack of clear differences in the immune system give credence to this hypothesis.
"I am quite convinced that functional changes in the brain play a key role, which means that psychological processes are important," he says.
Skeptical of suspended brain idea
Sommerfelt sees things in a completely different way.
He believes there is no good research to support the view that ME/CFS is caused by the brain putting the body in constant state of high alert, even though the hypothesis cannot be ruled out.
A previous thorough study done by Wyller's research group goes against the idea, Sommerfelt says. In that study, ME/CFS patients were given the drug clonidine, which suppresses stress reactions. However, it turned out that the drug did not cause fewer fatigue symptoms.
Sommerfelt believes the findings from the new study are compatible with many hypotheses about cause, including Wyller's hypothesis.
He nevertheless thinks that it is much more likely that mono impacts the immune system, which in turn alters the regulatory mechanisms that include the brain. This can happen in very complex ways that may not have been captured by the measurement methods in this study, says Sommerfelt.
Disagreement on cognitive therapy
Wyller believes several studies show that cognitive behavioural therapy is effective.
The organization Recovery Norway has gathered about 50 testimonials from people who overcame ME/CFS after using psychological methods.
"The brain is plastic, and this should be good news for patients," says Wyller.
But not all ME/CFS patients have had a positive experience with this type of treatment.
Norway’s ME Association's user survey from 2013 found that approximately one third of the 1100 survey participants stated that they had tried cognitive therapy. The vast majority experienced no positive effect. Some stated that their condition worsened.
Coping strategies important
Paediatrician Sommerfelt does not agree with Wyller that cognitive therapy works well for strictly defined ME/CFS cases.
“There isn’t any support for cognitive therapy being an effective treatment. Some individuals benefit from cognitive therapy or other coping strategies, but not many,” he says.
However, Sommerfelt agrees that a purely biomedical perspective is a poor approach in virtually all diseases, especially chronic and taxing illnesses like ME/CFS.
“Coping strategies are very important,” he says.
The paediatrician believes it is likely that some patients with chronic fatigue that fall outside the strict criteria for ME/CFS may have symptoms due to causes that can be treated well with cognitive therapy.
“But it’s important not to mix apples and oranges here,” he says.
“A long-standing and solid tradition in medicine holds that diseases and conditions that you do not understand should first be defined strictly by research, because it reduces the chance of actually examining several different diseases or causal mechanisms at once,” says Sommerfelt.
International disagreement
Why do professionals in the field interpret the existing research material so differently?
“I think this shows that research always happens against a backdrop of one's own perceptions,” says Wyller.
And the phenomenon applies to researchers in many countries. The disagreement among professionals is reflected in strikingly different official information on treatment.
NHS, the UK health authority, recommends cognitive behavioural therapy and graded exercise therapy – a customized training programme aimed at increasing activity levels over time.
However, the US Center for Disease Control website warns against too much activity. Instead, they advise patients to avoid the crashes brought on by too much physical and mental effort, and suggest finding a level where they remain stable.
The CDC barely mentions cognitive therapy. It only appears as a tool for treating anxiety and depression if a patient has these symptoms in addition to ME/CFS.
Only when our knowledge base about the disease grows and becomes less ambiguous, are viewpoints likely to converge on what causes ME/CFS and how the disease should be treated.
But it's big difference in how to read the results, depending on who you ask.
And it seems both sides of view are allowed to speak in the article:
The results show some small differences in the immune system between people who regain their health and those who develop ME/CFS or other chronic fatigue after mono, but not enough to explain the dramatic disparity in symptoms.
Professor Vegard Bruun Bratholm Wyller led the study and believes the results support the hypothesis that ME/CFS is due to a hypersensitivity in the brain. This leads to signals from the outside world being over-interpreted because the nervous system is on continuous high alert.
Professor and paediatrician Kristian Sommerfelt, on the other hand, believes that the results only show that the participants with a lot of symptoms after their bout with mono more often develop chronic fatigue, and in some cases chronic fatigue syndrome.
He notes that brain hypersensitivity was not investigated in this study.
Almost half developed CF or ME/CFS
Wyller and his colleagues recruited a group of about 200 adolescents between the ages of 12 and 20, who had just been diagnosed with mononucleosis. In addition, they included a healthy control group without the illness. Researchers followed up on both groups six months later.
The participants completed a questionnaire on their symptoms, and the researchers ran several different tests that could reveal something about disparities, for example in the immune system or the hormone balance.
After six months, 91 of the participants had developed chronic fatigue. Of these, 26 met the so-called Fukuda criteria for ME/CFS. Slightly fewer – 19 participants – had ME/CFS according to the strict Canadian consensus criteria.
Thinks the brain rules
"Overall, this suggests that ME/CFS and CF are about how the brain perceives the body, not how the body actually is," Wyller says.
He compares this with chronic pain. “You can have a lot of pain without finding anything wrong in your body. It's about how the nervous system responds,” he says.
The research on pain has shown that the nervous system can change, for example after a physical injury, so that it begins to perceive signals differently. It simply rebuilds so that certain signals – like touch or heat and cold – are suddenly perceived as pain instead.
A lot suggests that the pain level you feel may depend at least as much on how the brain responds to it as on what kind of stress you are physically exposed to.
Other studies have shown that normal fatigue after exercise is also controlled more from the brain than from the muscles. When top athletes give their all and collapse on the goal line, the muscles in fact still have strength left, but the brain says stop.
Wyller believes similar mechanisms are at work with ME/CFS, where the brain is somehow suspended in perpetual high alert, and normal signals from the outside world get over-interpreted.
He believes the lack of clear differences in the immune system give credence to this hypothesis.
"I am quite convinced that functional changes in the brain play a key role, which means that psychological processes are important," he says.
Skeptical of suspended brain idea
Sommerfelt sees things in a completely different way.
He believes there is no good research to support the view that ME/CFS is caused by the brain putting the body in constant state of high alert, even though the hypothesis cannot be ruled out.
A previous thorough study done by Wyller's research group goes against the idea, Sommerfelt says. In that study, ME/CFS patients were given the drug clonidine, which suppresses stress reactions. However, it turned out that the drug did not cause fewer fatigue symptoms.
Sommerfelt believes the findings from the new study are compatible with many hypotheses about cause, including Wyller's hypothesis.
He nevertheless thinks that it is much more likely that mono impacts the immune system, which in turn alters the regulatory mechanisms that include the brain. This can happen in very complex ways that may not have been captured by the measurement methods in this study, says Sommerfelt.
Disagreement on cognitive therapy
Wyller believes several studies show that cognitive behavioural therapy is effective.
The organization Recovery Norway has gathered about 50 testimonials from people who overcame ME/CFS after using psychological methods.
"The brain is plastic, and this should be good news for patients," says Wyller.
But not all ME/CFS patients have had a positive experience with this type of treatment.
Norway’s ME Association's user survey from 2013 found that approximately one third of the 1100 survey participants stated that they had tried cognitive therapy. The vast majority experienced no positive effect. Some stated that their condition worsened.
Coping strategies important
Paediatrician Sommerfelt does not agree with Wyller that cognitive therapy works well for strictly defined ME/CFS cases.
“There isn’t any support for cognitive therapy being an effective treatment. Some individuals benefit from cognitive therapy or other coping strategies, but not many,” he says.
However, Sommerfelt agrees that a purely biomedical perspective is a poor approach in virtually all diseases, especially chronic and taxing illnesses like ME/CFS.
“Coping strategies are very important,” he says.
The paediatrician believes it is likely that some patients with chronic fatigue that fall outside the strict criteria for ME/CFS may have symptoms due to causes that can be treated well with cognitive therapy.
“But it’s important not to mix apples and oranges here,” he says.
“A long-standing and solid tradition in medicine holds that diseases and conditions that you do not understand should first be defined strictly by research, because it reduces the chance of actually examining several different diseases or causal mechanisms at once,” says Sommerfelt.
International disagreement
Why do professionals in the field interpret the existing research material so differently?
“I think this shows that research always happens against a backdrop of one's own perceptions,” says Wyller.
And the phenomenon applies to researchers in many countries. The disagreement among professionals is reflected in strikingly different official information on treatment.
NHS, the UK health authority, recommends cognitive behavioural therapy and graded exercise therapy – a customized training programme aimed at increasing activity levels over time.
However, the US Center for Disease Control website warns against too much activity. Instead, they advise patients to avoid the crashes brought on by too much physical and mental effort, and suggest finding a level where they remain stable.
The CDC barely mentions cognitive therapy. It only appears as a tool for treating anxiety and depression if a patient has these symptoms in addition to ME/CFS.
Only when our knowledge base about the disease grows and becomes less ambiguous, are viewpoints likely to converge on what causes ME/CFS and how the disease should be treated.
Gemini
Senior Member
- Messages
- 1,176
- Location
- East Coast USA
@Learner1 exactly!
Komaroff's JAMA review paper [July 5, 2019] highlights your point and summarizes recent scientific advances not mentioned by these authors:
https://forums.phoenixrising.me/thr...chronic-fatigue-syndrome-komaroff-2019.76892/
You don't need to have one factor obviously abnormal to cause strong symptoms. You can have many factors that are slightly off--maybe still within the boundaries of 'normal'--which altogether create the symptoms. That sort of dysfunction is much harder to identify.
YippeeKi YOW !!
Senior Member
- Messages
- 16,047
- Location
- Second star to the right ...
@HowToEscape?
Absolutely effing BRILLIANT analogy!!!
Learner1
Senior Member
- Messages
- 6,305
- Location
- Pacific Northwest
Except for the side that says this is a biological, multiorgan system disease with autoimmunity likely in many of us, with structural issues like CCI in others.
Many of us who are improving have benefited with heavy medical interventions such as IVIG, Valcyte, surgery for CCI, cholinergic drugs, Rituximab and plasmapharesis.
Others have been given all kinds of psychoatric drugs which may mask problems, deplete nutrients, and even cause long term damage.
This disease does not belong in the hands of psychiatrists.
Maybe all patients with broken bones, cancer, diabetes, and heart attacks should have psychiatry help them get over their problems too.
ljimbo423
Senior Member
- Messages
- 4,705
- Location
- United States, New Hampshire
For myself, I feel this comes down to a lack of knowledge. Most doctors just don't have the information they need to understand or treat ME/CFS.
I live in the United States and here the doctors are not taught in medical school about ME/CFS or how to treat it. So how would they know? The answer is, they don't.
I feel like it's the governments and states responsibility to teach doctors about the biological causes of ME/CFS, so they aren't so ignorant, dismissive or just don't understand.
This would take psychiatry out of the picture. So that the biological causes can be focused on.
The fact that the diagnosis criteria identify so few with ME/ CFS, yet this is generalised, and that much of this was done via self report questionnaires says much for the quality of research.
Of interest though is the fact that the NHS is being quoted rather than a reference to PACE.
Of interest though is the fact that the NHS is being quoted rather than a reference to PACE.