This piece is so strong and so necessary. I wish you could give a TED Talk on this! Thank you so much for aiming your brilliant career at our suffering community and shifting our many harmful narratives. 🩵
I liked Ron Davis' comment a while back where I think he said that ME is the last big common disease we know little about and have no treatment for. It says that ME research is an area of great opportunity, for patients and researchers.
Although the best time to start funding post viral research properly was decades ago, the second best time is now, before the next mutated virus comes along that ends careers and futures.
One would think the UK's Labour government would see the sense in research to get people back to work and paying taxes!
Very interesting and thought-provoking, particularly the point about how more "sympathetic" narratives are also harmful to understanding of and this condition and effective research into its treatment. Thanks for taking the time to consider all this and write about it.
"The history of human civilisation is littered with examples of natural phenomena, including human disease, initially explained by dogma. The dogma is initially created to fill a void in comprehension, but it is eventually replaced by rational scientific understanding. The creators of such dogma are often authoritarian, hierarchical figures who then ferociously defend their own creation.''
"Additional examples of the medical profession “getting it wrong” have continued since this time. General Paralysis of the Insane—a manifestation of tertiary syphilis—and multiple sclerosis were both considered to have a psychological basis [1] until the true physical basis was discovered. There are other examples: the tremor of Parkinson’s disease had been attributed to “the expression of the moralistic man’s suppressed desire to masturbate.''
"As with previous examples of medical dogma, the belief that ME/CFS is “psychological” will eventually be consigned to the dustbin of medical history, alongside miasma theory and suchlike. Compelling evidence of physical causation is now accumulating but the authoritarian cabal who promoted the psychological dogma are even now trying to defend it in the face of irrefutable scientific evidence to the contrary. History repeats itself, to coin a phrase, given the stories of Galileo, Semmelweis and Snow, and the cabal referred to, do not yet recognise how badly placed they are in the historical narrative of ME/CFS. In some circumstances, the tendency of exponents to hold on to their dogma is reminiscent of the tenacious way conspiracy theorists are wedded to their particular false narrative. Sadly, the argument over the cause of ME/CFS would probably have remained academic but for one grim reality: treatment based on psychological dogma has damaged patients, some very severely.''
Thankfully we now powerful evidence to challenge and overturn this narrative for good.
A new study from the NIH in the United States, which lasted eight years, and had more than 70 authors from 15 countries, was published in Nature Communications in February of this year. This study, “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome”, clearly states that ME is a biological illness whose primary characteristics are immune dysfunction and brain abnormalities.
In a recent interview with Dr Avindra Nath, clinical director of NINDS, who oversaw this research I asked him the following:
From looking at your findings, it appears that you clearly noted that ME is a physical disease whose key characteristics are immune dysfunction and brain abnormalities. Is that a fair assessment of your findings? If so, please can you briefly explain these findings for the layperson?
Avindra Nath: Yes, that is correct. We hope that one of the major takeaways from our study is that we have convincingly demonstrated the biological basis of the disease that cannot be explained by deconditioning and psychological factors.
We have further identified several novel targets for modifying the course of the disease. We hope these findings will change the minds of many. All the same, I am certain that once we have a biological therapy for ME/CFS, it will provide definitive evidence for the biological basis of the disease.
We found that post-infectious ME/CFS is a multisystemic disease, with involvement of the immune system, autonomic nervous system, the brain and the gut. We believe that the primary defect is in the maturation of B cells which leads to immune exhaustion and activation of innate immune responses.''
Nath’s idea appears to be the immune system attempting to compensate for the B-cell exhaustion by ramping up the activity of the innate immune system which is: a) designed to produce a kind of holding action to give the B and T-cells time to mature; but b) is not effective at ridding the body of pathogens; and c) produces a lot of inflammation to boot. The gist is that when the B-cells get knocked down (and possibly the T-cells, since they appear to be exhausted as well), the responsibility for fighting off the infection lands on the inflammation-producing innate immune system. In this scenario, the infection never gets resolved and the pathogen keeps tweaking the immune system – causing the symptoms of ME/CFS.
It is research that such as this which will help forge a new paradigm for the understanding of ME.
As advocates we can use this new research to help break the old paradigm and construct a new narrative around our illness.
Great article any chance you can submit it to a mainstream media outlet? I try to explain this many times but generally people - don’t understand how damaging this problem of narrative is.
Where would you be platforming any writings Karen?
What you refer to as narratives have always been influential especially in the belittling and ghosting of PwM.E. And I completely agree about the labelling of M.E. as a ‘complicated’ illness. That’s a clever pseudo empathetic narrative that’s doing the rounds now. As are the new M.E clinics run by doctors with an ‘interest’ in M.E. They plug the same old ‘management’ techniques expected of the patient….which handily means they don’t have to research a biological cause. .These narratives are a smoke screen ..the new way of looking as if something is being done about M.E…but are initiated by the same system of non-belief psychiatrists who are seeking to mitigate the damage they have caused while holding no accountability and still keeping control. Its my understanding that these same influential powerful people sit on NHS boards, so have the power to keep us all going round in the same circles…while appearing to have changed the landscape. In my opinion it’s more cynical than the ghosting.
We try to share guest posts on our substack every 2 weeks!
We've asked people who would like to write for us to submit ideas/contact details at our suggestion box. We'll be going through them all at some point soon and picking out some that we think could work well in the new year :)
Thank you Karen. This makes a lot of sense to me. I also think that the #ThereforME campaign has already started to shift narratives and that gives me hope.
I just want to find someone who can save my family member who is desperately ill and still getting no help other than being told to take antidepressants you have ARFID . After 2.5 years she is just fading away
Thank you for discussing the importance of narrative. The history of ME is a perfect example of why words matter. This has been on my mind for decades since I contracted ME in 1989 and watched the harmful narrative put into place. Creating the CFS label to bury ME was extremely effective. I was glad to see you include the use of 'mystery" as being problematic.
I think it is vital we dig deeper than key words to understand the harmful narrative. CFS was not just a label change... it changed the definition. In 2011 the ME International Consensus Criteria (ICC) offered a way forward with more accurate way to diagnose and more accurate vocabulary to change the narrative.
Malaise is another word that affects the way society views ME. Vague PEM became more clinically accurate with the ICC’s post-exertional neuroimmune exhaustion.
"ME also known as CFS" is another problematic narrative. ME as defined by Ramsay or the ICC is not the same as CFS-Fukuda. These labels do not apply to identical patient groups. CFS is broad and vague and its creation buried the ME patient group within a much different patient group. I believe this burying of ME within a group of people diagnosable only under CFS, who are often treatable with behavior modification, is a key reason society is so misinformed.
This misinformation has led to far too many in the Long Covid community insisting that they are much sicker than people with ME. The view of society based on the CFS narrative is that we aren't very sick... tired in a way that we can self manage through "pacing".
"Pacing" has become another problematic narrative. ME cannot be "managed" through pacing although it is needed in order to stay alive. I think pushing the pacing narrative has skewed the reality toward treatment based on behavior modification.
"ME/CFS is a disease" is another narrative challenge. ME/CFS as defined by the IOM is not one patient group. It is not "a" disease. It is only slightly less vague than CFS Fukuda. It encompasses multiple patient groups. The IOM used info from both CFS and ME patient groups then dumped everything that made ME a unique disease to create an umbrella criteria.
The NICE guidelines are based on the IOM report.
I agree about the importance of building a better narrative. Which is why I write free Substack articles to help people understand the differences in the criteria and the value found in using the International Consensus Criteria.
FYI - We could use more signatures on the petition aimed at US HHS. If we get enough signatures we can approach the new administration. An important part of changing the narrative is to make the ICC the criteria used by doctors and researchers.
Long Covid criteria is deja-vu. It is broad and vague lumping multiple patient groups together. We don't know how many lumped into that vague criteria have myalgic encephalomyelitis, but I am positive ME didn't magically disappear at onset of COVID-19.
Just as we need to know how many lumped into the ME/CFS criteria have myalgic encephalomyelitis, we need to know which people lumped into the long covid diagnosis have ME. Then study them side by side to see if they really are the same.
Again, thank you for using your knowledge to delve into this topic.
I agree. We need to get on the front foot. Calling ME a ‘mystery illness’ and saying ‘there’s nothing we can do’ are cop outs. There are heaps of things you can do to alleviate symptoms and slow worsening of symptoms, and there are several plausible explanations - good hypotheses at least - on mechanisms. Not everyone agrees and as whenever a paradigm shift is happening it all seems to be a swirl but I believe in the end there will be clarity. (In the mean time Competing theories need to make sure they don’t poo poo the others)
Having researched narratives around global health politics I agree that getting the framing right is crucial to form coalitions and unlock political and financial will. It has been encouraging to see some steps in the right direction in recent public discussions.
The idea of a scandal is important but only gets us so far. We also need the idea of a great (even 'grand') challenge, with a compelling puzzle at its heart, promising clues and possibility of huge scientific breakthroughs, a massive beneficiary population, great economic wins, along with heroes and, to be sure, villains.
This piece goes a long way towards forging the storylines we need.
As someone with a background in human rights law, I have spent most of my adult life listening to the stories of survivors. My written work has centred around these stories and the power of the narrative. I have listened, recorded their stories and then gone on to write of how powerful these stories are - and how we must bear witness.
All notions of self-identity are shattered and they are haunted both by their experiences and by the fact that society does not listen to their stories. Primo Levi, a survivor of the Holocaust and the writer of ‘If this is a Man’, writes of a recurring nightmare that he had whilst at Auschwitz, that he would leave the camp and that people would turn their heads away when he tried to tell his story to them. When he was released from the camp - this is indeed what happened.
I am not comparing my experience to that of someone who has survived the Holocaust. But rather of those survivors of state sanctioned abuse whom I have worked with over all these years. I have long covid/ME and within the medical system have been stripped of my dignity, my sense of self, and even had one medical intervention that I could (without exaggeration) compare to torture.
I find it hard to fathom what people with ME have experienced over so many decades. The mis-naming and diminishment of this illness (CFS), its severity, the stigma and the refusal of the medical establishment to acknowledge it, is beyond comprehension.
Thank you for Raising your Voice for us. All power to you and your work. All power to those of us who are suffering. And if our ‘energy envelopes’ allow it - we too must speak and speak out loud of what it is to inhabit a body so ill and yet so dismissed.
This piece is so strong and so necessary. I wish you could give a TED Talk on this! Thank you so much for aiming your brilliant career at our suffering community and shifting our many harmful narratives. 🩵
I liked Ron Davis' comment a while back where I think he said that ME is the last big common disease we know little about and have no treatment for. It says that ME research is an area of great opportunity, for patients and researchers.
Although the best time to start funding post viral research properly was decades ago, the second best time is now, before the next mutated virus comes along that ends careers and futures.
One would think the UK's Labour government would see the sense in research to get people back to work and paying taxes!
Very interesting and thought-provoking, particularly the point about how more "sympathetic" narratives are also harmful to understanding of and this condition and effective research into its treatment. Thanks for taking the time to consider all this and write about it.
Dr Wlliam Weir and Dr Nigel Speight have explained this well in an article they wrote in 2021:
https://www.mdpi.com/2227-9032/9/8/984
"The history of human civilisation is littered with examples of natural phenomena, including human disease, initially explained by dogma. The dogma is initially created to fill a void in comprehension, but it is eventually replaced by rational scientific understanding. The creators of such dogma are often authoritarian, hierarchical figures who then ferociously defend their own creation.''
"Additional examples of the medical profession “getting it wrong” have continued since this time. General Paralysis of the Insane—a manifestation of tertiary syphilis—and multiple sclerosis were both considered to have a psychological basis [1] until the true physical basis was discovered. There are other examples: the tremor of Parkinson’s disease had been attributed to “the expression of the moralistic man’s suppressed desire to masturbate.''
"As with previous examples of medical dogma, the belief that ME/CFS is “psychological” will eventually be consigned to the dustbin of medical history, alongside miasma theory and suchlike. Compelling evidence of physical causation is now accumulating but the authoritarian cabal who promoted the psychological dogma are even now trying to defend it in the face of irrefutable scientific evidence to the contrary. History repeats itself, to coin a phrase, given the stories of Galileo, Semmelweis and Snow, and the cabal referred to, do not yet recognise how badly placed they are in the historical narrative of ME/CFS. In some circumstances, the tendency of exponents to hold on to their dogma is reminiscent of the tenacious way conspiracy theorists are wedded to their particular false narrative. Sadly, the argument over the cause of ME/CFS would probably have remained academic but for one grim reality: treatment based on psychological dogma has damaged patients, some very severely.''
Thankfully we now powerful evidence to challenge and overturn this narrative for good.
A new study from the NIH in the United States, which lasted eight years, and had more than 70 authors from 15 countries, was published in Nature Communications in February of this year. This study, “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome”, clearly states that ME is a biological illness whose primary characteristics are immune dysfunction and brain abnormalities.
In a recent interview with Dr Avindra Nath, clinical director of NINDS, who oversaw this research I asked him the following:
From looking at your findings, it appears that you clearly noted that ME is a physical disease whose key characteristics are immune dysfunction and brain abnormalities. Is that a fair assessment of your findings? If so, please can you briefly explain these findings for the layperson?
Avindra Nath: Yes, that is correct. We hope that one of the major takeaways from our study is that we have convincingly demonstrated the biological basis of the disease that cannot be explained by deconditioning and psychological factors.
We have further identified several novel targets for modifying the course of the disease. We hope these findings will change the minds of many. All the same, I am certain that once we have a biological therapy for ME/CFS, it will provide definitive evidence for the biological basis of the disease.
We found that post-infectious ME/CFS is a multisystemic disease, with involvement of the immune system, autonomic nervous system, the brain and the gut. We believe that the primary defect is in the maturation of B cells which leads to immune exhaustion and activation of innate immune responses.''
Nath’s idea appears to be the immune system attempting to compensate for the B-cell exhaustion by ramping up the activity of the innate immune system which is: a) designed to produce a kind of holding action to give the B and T-cells time to mature; but b) is not effective at ridding the body of pathogens; and c) produces a lot of inflammation to boot. The gist is that when the B-cells get knocked down (and possibly the T-cells, since they appear to be exhausted as well), the responsibility for fighting off the infection lands on the inflammation-producing innate immune system. In this scenario, the infection never gets resolved and the pathogen keeps tweaking the immune system – causing the symptoms of ME/CFS.
It is research that such as this which will help forge a new paradigm for the understanding of ME.
As advocates we can use this new research to help break the old paradigm and construct a new narrative around our illness.
Great article any chance you can submit it to a mainstream media outlet? I try to explain this many times but generally people - don’t understand how damaging this problem of narrative is.
Where would you be platforming any writings Karen?
What you refer to as narratives have always been influential especially in the belittling and ghosting of PwM.E. And I completely agree about the labelling of M.E. as a ‘complicated’ illness. That’s a clever pseudo empathetic narrative that’s doing the rounds now. As are the new M.E clinics run by doctors with an ‘interest’ in M.E. They plug the same old ‘management’ techniques expected of the patient….which handily means they don’t have to research a biological cause. .These narratives are a smoke screen ..the new way of looking as if something is being done about M.E…but are initiated by the same system of non-belief psychiatrists who are seeking to mitigate the damage they have caused while holding no accountability and still keeping control. Its my understanding that these same influential powerful people sit on NHS boards, so have the power to keep us all going round in the same circles…while appearing to have changed the landscape. In my opinion it’s more cynical than the ghosting.
We try to share guest posts on our substack every 2 weeks!
We've asked people who would like to write for us to submit ideas/contact details at our suggestion box. We'll be going through them all at some point soon and picking out some that we think could work well in the new year :)
https://docs.google.com/forms/d/e/1FAIpQLSe0dlN8YArfb6bbDXVOEn05-V5qUMoX_0f8rfo98lFaqvlq6Q/viewform?usp=sf_link
Thank you Karen. This makes a lot of sense to me. I also think that the #ThereforME campaign has already started to shift narratives and that gives me hope.
I just want to find someone who can save my family member who is desperately ill and still getting no help other than being told to take antidepressants you have ARFID . After 2.5 years she is just fading away
Thank you for discussing the importance of narrative. The history of ME is a perfect example of why words matter. This has been on my mind for decades since I contracted ME in 1989 and watched the harmful narrative put into place. Creating the CFS label to bury ME was extremely effective. I was glad to see you include the use of 'mystery" as being problematic.
I think it is vital we dig deeper than key words to understand the harmful narrative. CFS was not just a label change... it changed the definition. In 2011 the ME International Consensus Criteria (ICC) offered a way forward with more accurate way to diagnose and more accurate vocabulary to change the narrative.
Malaise is another word that affects the way society views ME. Vague PEM became more clinically accurate with the ICC’s post-exertional neuroimmune exhaustion.
"ME also known as CFS" is another problematic narrative. ME as defined by Ramsay or the ICC is not the same as CFS-Fukuda. These labels do not apply to identical patient groups. CFS is broad and vague and its creation buried the ME patient group within a much different patient group. I believe this burying of ME within a group of people diagnosable only under CFS, who are often treatable with behavior modification, is a key reason society is so misinformed.
This misinformation has led to far too many in the Long Covid community insisting that they are much sicker than people with ME. The view of society based on the CFS narrative is that we aren't very sick... tired in a way that we can self manage through "pacing".
"Pacing" has become another problematic narrative. ME cannot be "managed" through pacing although it is needed in order to stay alive. I think pushing the pacing narrative has skewed the reality toward treatment based on behavior modification.
"ME/CFS is a disease" is another narrative challenge. ME/CFS as defined by the IOM is not one patient group. It is not "a" disease. It is only slightly less vague than CFS Fukuda. It encompasses multiple patient groups. The IOM used info from both CFS and ME patient groups then dumped everything that made ME a unique disease to create an umbrella criteria.
The NICE guidelines are based on the IOM report.
I agree about the importance of building a better narrative. Which is why I write free Substack articles to help people understand the differences in the criteria and the value found in using the International Consensus Criteria.
Here is article I wrote about ME/CFS being an umbrella criteria. https://colleensteckelmeiccinfo.substack.com/p/mecfs-is-an-umbrella-term
FYI - We could use more signatures on the petition aimed at US HHS. If we get enough signatures we can approach the new administration. An important part of changing the narrative is to make the ICC the criteria used by doctors and researchers.
https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
Long Covid criteria is deja-vu. It is broad and vague lumping multiple patient groups together. We don't know how many lumped into that vague criteria have myalgic encephalomyelitis, but I am positive ME didn't magically disappear at onset of COVID-19.
Just as we need to know how many lumped into the ME/CFS criteria have myalgic encephalomyelitis, we need to know which people lumped into the long covid diagnosis have ME. Then study them side by side to see if they really are the same.
Again, thank you for using your knowledge to delve into this topic.
Thank you Karen. Beautifully written and as others have said, it deserves a place in mainstream media ♥️💙
An absolute gem of an article. Thank you, Karen.
I agree. We need to get on the front foot. Calling ME a ‘mystery illness’ and saying ‘there’s nothing we can do’ are cop outs. There are heaps of things you can do to alleviate symptoms and slow worsening of symptoms, and there are several plausible explanations - good hypotheses at least - on mechanisms. Not everyone agrees and as whenever a paradigm shift is happening it all seems to be a swirl but I believe in the end there will be clarity. (In the mean time Competing theories need to make sure they don’t poo poo the others)
Excellent piece, thank you
This is excellent, thank you.
Having researched narratives around global health politics I agree that getting the framing right is crucial to form coalitions and unlock political and financial will. It has been encouraging to see some steps in the right direction in recent public discussions.
The idea of a scandal is important but only gets us so far. We also need the idea of a great (even 'grand') challenge, with a compelling puzzle at its heart, promising clues and possibility of huge scientific breakthroughs, a massive beneficiary population, great economic wins, along with heroes and, to be sure, villains.
This piece goes a long way towards forging the storylines we need.
🙏🙏🙏
Hi Karen,
Thank you so much for this article.
As someone with a background in human rights law, I have spent most of my adult life listening to the stories of survivors. My written work has centred around these stories and the power of the narrative. I have listened, recorded their stories and then gone on to write of how powerful these stories are - and how we must bear witness.
All notions of self-identity are shattered and they are haunted both by their experiences and by the fact that society does not listen to their stories. Primo Levi, a survivor of the Holocaust and the writer of ‘If this is a Man’, writes of a recurring nightmare that he had whilst at Auschwitz, that he would leave the camp and that people would turn their heads away when he tried to tell his story to them. When he was released from the camp - this is indeed what happened.
I am not comparing my experience to that of someone who has survived the Holocaust. But rather of those survivors of state sanctioned abuse whom I have worked with over all these years. I have long covid/ME and within the medical system have been stripped of my dignity, my sense of self, and even had one medical intervention that I could (without exaggeration) compare to torture.
I find it hard to fathom what people with ME have experienced over so many decades. The mis-naming and diminishment of this illness (CFS), its severity, the stigma and the refusal of the medical establishment to acknowledge it, is beyond comprehension.
Thank you for Raising your Voice for us. All power to you and your work. All power to those of us who are suffering. And if our ‘energy envelopes’ allow it - we too must speak and speak out loud of what it is to inhabit a body so ill and yet so dismissed.
In solidarity,
Willow