I have now watched the last 3 talks for this day. I didn't attempt to take notes during the talks, as last time it set off PEM, so my sketchy notes here are based on my memory:
METABOLISM AND CO-MORBID CONDITIONS
3.45 - 4.45 pm
Dysfunctional cerebrospinal fluid metabolites and lipids infer white matter dysfunction in ME/CFS and mitochondrial dysfunction in Gulf War Illness (GWI)
James Baraniuk, Georgetown University, USA
Research this was based on is linked in the above spoilers. They apologised for failing to record the first part of this talk.
The data from cerebrospinal fluid for ME/CFS and Gulf War Illness showed some differences between disease groups, between disease and healthy controls and between before and after exercise challenge. The differences he talked about were in 4 groups of metabolites - amino acids, nucleic acids, glucose related and fat related. His conclusion, I think, was that these differences, whether increases or decreased for specific metabolites, and whether in CSF, plasma or urine, all indicate disrupted energy metabolism in ME/CFS.
In the Q&A after, he answered a question about a specific metabolite which I didn't note down. He also mentioned a part of the brain that is affected that in GWI may mean some are more prone to PTSD and in ME/CFS to anxiety that is often misdiagosed as depression. He is very keen for there to be more funding for comparing outcomes of metabolomic studies between different disease groups for 2 reasons. First to find out whether any of them are unique to ME/CFS so could be a biomarker. And second because similarities in metabolic findings with, say inflammatory disorders or cancer, may help in elucidating what is happening in ME/CFS.
Gender matters: perceived burdensomeness increased in males with chronic invisible illness
Cathy Pederson, Wittenberg University, USA
This talk was billed as about feelings of burdensomeness in males compared with females with chronic illness, but was actually based on her published studies listed in the spoiler above that we have already discussed. She concluded that there is a much higher percentage of men who feel they are a burden to family or society than women regardless of illness severity.
They data was based on online questionnaires and participants recruited on social media. The major flaw in her argument that she didn't address seemed to me the self selecting nature of the participants, and the fact that there were hundreds of females and only a few dozen males. This self selection seems to me to rule out any conclusions about gender differences in feeling a burden, as it may be simply finding that men are more likely to participate in surveys like this than women only if they are severely troubled by how their illness makes them feel.
The subject of medical gaslighting on how much of a burden people feel came up in the Q&A. Her personal approach with her daughter who has been sick since age 10 is to recognise gaslighting and never see that clinician again. In other words, her advice is, move on. While I agree that was the best thing in terms of what you say to your child about such an encounter, and good advice if we are in a position to choose, it seemed simplistic to me, as many of us are stuck with the only clinicians we have access to gaslighting us.
Do people with joint hypermobility represent a subgroup of myalgic encephalomyelitis/ chronic fatigue syndrome?
Kathleen Mudie, Solve ME/CFS Initiative, USA
This was based on early, as yet unpublished, analysis of some data from the Solve ME You+ME registry which now has about 2500 ME/CFS participants.
I was puzzled that she started well, explaining that Beignton scores are not diagnostic of Joint Hypermobility Syndrome or EDS, and should only be used as a screening tool to suggest further investigation. And she explained that joint hypermobility population stats vary from about 10% to 25% in different studies, that it's much more common in females than males, and that most people with hypermobile joints are asymptomatic, and a minority have things like dislocations, sprains and pain.
And she explained that EDS is a rare genetic connective tissue disorder that affects connective tissues in lots of body systems.
Despite all that she went on to talk about some ME/CFS symptoms that she hypothesised could be related to connective tissue disorder.
She then said 12% of people with ME/CFS in the Registry have Beignton scores of 5+ in under 50's and 4+ in over 50's which she used as a cut off point. And further that some of these do and some don't self diagnose as EDS.
So on the basis of a prevalence rate of an indicator that is not diagnostic for joint hypermobility that is no higher than the general population hypermobility, she wanted to make a big thing of hypermobility being a factor in ME/CFS for a subgroup of patients. Whereas it seems to me that the fact that the prevalence in their sample is the same as the general population should indicate that there is no special realationship between the two syndromes.
METABOLISM AND CO-MORBID CONDITIONS
3.45 - 4.45 pm
Dysfunctional cerebrospinal fluid metabolites and lipids infer white matter dysfunction in ME/CFS and mitochondrial dysfunction in Gulf War Illness (GWI)
James Baraniuk, Georgetown University, USA
Review of the Midbrain Ascending Arousal Network Nuclei and Implications for (ME/CFS), Gulf War Illness (GWI) and (PEM), 2022, Baraniuk
Differential Effects of Exercise on fMRI of the Midbrain Ascending Arousal Network Nuclei in ME/CFS and GWI in a Model of PEM, 2021, Baraniuk et al
Subcortical brain segment volumes in Gulf War Illness and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Addiego et al
Exercise modifies glutamate and other metabolic biomarkers in cerebrospinal fluid from Gulf War Illness and [ME/CFS], Baranuik et al, 2021
Informatics Inference of Exercise-Induced Modulation of Brain Pathways Based on Cerebrospinal Fluid Micro-RNAs in ME/CFS, 2020, Narayan et al
More on Baraniuk's research listed here
Differential Effects of Exercise on fMRI of the Midbrain Ascending Arousal Network Nuclei in ME/CFS and GWI in a Model of PEM, 2021, Baraniuk et al
Subcortical brain segment volumes in Gulf War Illness and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2021, Addiego et al
Exercise modifies glutamate and other metabolic biomarkers in cerebrospinal fluid from Gulf War Illness and [ME/CFS], Baranuik et al, 2021
Informatics Inference of Exercise-Induced Modulation of Brain Pathways Based on Cerebrospinal Fluid Micro-RNAs in ME/CFS, 2020, Narayan et al
More on Baraniuk's research listed here
The data from cerebrospinal fluid for ME/CFS and Gulf War Illness showed some differences between disease groups, between disease and healthy controls and between before and after exercise challenge. The differences he talked about were in 4 groups of metabolites - amino acids, nucleic acids, glucose related and fat related. His conclusion, I think, was that these differences, whether increases or decreased for specific metabolites, and whether in CSF, plasma or urine, all indicate disrupted energy metabolism in ME/CFS.
In the Q&A after, he answered a question about a specific metabolite which I didn't note down. He also mentioned a part of the brain that is affected that in GWI may mean some are more prone to PTSD and in ME/CFS to anxiety that is often misdiagosed as depression. He is very keen for there to be more funding for comparing outcomes of metabolomic studies between different disease groups for 2 reasons. First to find out whether any of them are unique to ME/CFS so could be a biomarker. And second because similarities in metabolic findings with, say inflammatory disorders or cancer, may help in elucidating what is happening in ME/CFS.
Gender matters: perceived burdensomeness increased in males with chronic invisible illness
Cathy Pederson, Wittenberg University, USA
Understanding suicidal ideation in people with chronic invisible illness, 2020, Pederson
Commentary: Suicide is a Concern for the Chronic Invisible Illness Community, 2020, Pederson
Note a misuse of statistics here
The Importance of Screening for Suicide Risk in Chronic Invisible Illness (2018) Pederson
Commentary: Suicide is a Concern for the Chronic Invisible Illness Community, 2020, Pederson
Note a misuse of statistics here
The Importance of Screening for Suicide Risk in Chronic Invisible Illness (2018) Pederson
They data was based on online questionnaires and participants recruited on social media. The major flaw in her argument that she didn't address seemed to me the self selecting nature of the participants, and the fact that there were hundreds of females and only a few dozen males. This self selection seems to me to rule out any conclusions about gender differences in feeling a burden, as it may be simply finding that men are more likely to participate in surveys like this than women only if they are severely troubled by how their illness makes them feel.
The subject of medical gaslighting on how much of a burden people feel came up in the Q&A. Her personal approach with her daughter who has been sick since age 10 is to recognise gaslighting and never see that clinician again. In other words, her advice is, move on. While I agree that was the best thing in terms of what you say to your child about such an encounter, and good advice if we are in a position to choose, it seemed simplistic to me, as many of us are stuck with the only clinicians we have access to gaslighting us.
Do people with joint hypermobility represent a subgroup of myalgic encephalomyelitis/ chronic fatigue syndrome?
Kathleen Mudie, Solve ME/CFS Initiative, USA
This was based on early, as yet unpublished, analysis of some data from the Solve ME You+ME registry which now has about 2500 ME/CFS participants.
I was puzzled that she started well, explaining that Beignton scores are not diagnostic of Joint Hypermobility Syndrome or EDS, and should only be used as a screening tool to suggest further investigation. And she explained that joint hypermobility population stats vary from about 10% to 25% in different studies, that it's much more common in females than males, and that most people with hypermobile joints are asymptomatic, and a minority have things like dislocations, sprains and pain.
And she explained that EDS is a rare genetic connective tissue disorder that affects connective tissues in lots of body systems.
Despite all that she went on to talk about some ME/CFS symptoms that she hypothesised could be related to connective tissue disorder.
She then said 12% of people with ME/CFS in the Registry have Beignton scores of 5+ in under 50's and 4+ in over 50's which she used as a cut off point. And further that some of these do and some don't self diagnose as EDS.
So on the basis of a prevalence rate of an indicator that is not diagnostic for joint hypermobility that is no higher than the general population hypermobility, she wanted to make a big thing of hypermobility being a factor in ME/CFS for a subgroup of patients. Whereas it seems to me that the fact that the prevalence in their sample is the same as the general population should indicate that there is no special realationship between the two syndromes.
