Simon McGrath
@simonmcg.bsky.social
I occasionally try to explain and comment on ME researchh, or even contribute to it. And I advocate for more and better research.
Reposted by Simon McGrath
1) Had a look at this paper on 'The clinical relevance of Mast Cell Activation in ME/CFS'.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
November 13, 2025 at 8:55 AM
1) Had a look at this paper on 'The clinical relevance of Mast Cell Activation in ME/CFS'.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
Reposted by Simon McGrath
📢 Exciting news!
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
November 4, 2025 at 1:01 PM
📢 Exciting news!
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
Today, we are proud to launch the Overlapping Illness Alliance, a coalition of charities working to improve recognition, care and support for those living with complex, overlapping conditions.
Reposted by Simon McGrath
We recently launched our Big Survey! 🎉
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
October 31, 2025 at 10:03 AM
We recently launched our Big Survey! 🎉
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡
Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/
Can anyone provide social media help setting up a bluesky account & Facebook page to reach #PwME like me, for someone who doesn't understand social media. Advice would be for great, also freelancing. It's for a friend, but I'd be the contact. Ideally, running the accounts as well (would be basic).
October 30, 2025 at 4:53 PM
Can anyone provide social media help setting up a bluesky account & Facebook page to reach #PwME like me, for someone who doesn't understand social media. Advice would be for great, also freelancing. It's for a friend, but I'd be the contact. Ideally, running the accounts as well (would be basic).
ME Association LDN trial update: this is well advanced. 208 people recruited, 123 dosed, 50 have had their 1st MRI scans & 39 both.
The research team expect to complete recruitment very soon, with all participant activities completed by February next year.
meassociation.org.uk/2025/10/upda...
The research team expect to complete recruitment very soon, with all participant activities completed by February next year.
meassociation.org.uk/2025/10/upda...
Update: LDN clinical trial: Progress Report July-September 2025 - The ME Association
We are pleased to share the latest quarterly update on […]
meassociation.org.uk
October 30, 2025 at 3:24 PM
ME Association LDN trial update: this is well advanced. 208 people recruited, 123 dosed, 50 have had their 1st MRI scans & 39 both.
The research team expect to complete recruitment very soon, with all participant activities completed by February next year.
meassociation.org.uk/2025/10/upda...
The research team expect to complete recruitment very soon, with all participant activities completed by February next year.
meassociation.org.uk/2025/10/upda...
Reposted by Simon McGrath
1) More excellent work by the WE&ME Foundation.
They have created ME/CFS fellowships: 6-month research stays with funding of up to € 40,000.
The call is co-funded by the WWTF (a big non-profit in Vienna dedicated to research and science) and has a total budget of € 200.000.
They have created ME/CFS fellowships: 6-month research stays with funding of up to € 40,000.
The call is co-funded by the WWTF (a big non-profit in Vienna dedicated to research and science) and has a total budget of € 200.000.
October 30, 2025 at 7:42 AM
1) More excellent work by the WE&ME Foundation.
They have created ME/CFS fellowships: 6-month research stays with funding of up to € 40,000.
The call is co-funded by the WWTF (a big non-profit in Vienna dedicated to research and science) and has a total budget of € 200.000.
They have created ME/CFS fellowships: 6-month research stays with funding of up to € 40,000.
The call is co-funded by the WWTF (a big non-profit in Vienna dedicated to research and science) and has a total budget of € 200.000.
"The guidelines will make it very clear that ME/CFS is a physical illness. The guidance is to support people with the psychological impact of living with a long-term, debilitating, physical condition. "
"We’re delighted to share the October 2025 update on the British Psychological Society (BPS) ME/CFS Guidelines.
Since our last update, we’ve made significant progress...."
Read in full: https://meassociation.org.uk/71q6
#MECFS #pwME #MyalgicE
Since our last update, we’ve made significant progress...."
Read in full: https://meassociation.org.uk/71q6
#MECFS #pwME #MyalgicE
Good Practice Guidelines for Psychologists Working with People with ME/CFS: October 2025 Update - The ME Association
Russell Flemming (ME Association) and Katherine Langford (Action for ME […]
meassociation.org.uk
October 30, 2025 at 11:05 AM
"The guidelines will make it very clear that ME/CFS is a physical illness. The guidance is to support people with the psychological impact of living with a long-term, debilitating, physical condition. "
Reposted by Simon McGrath
Hi all
I'm doing a birthday fundraiser (big birthday coming up next week). It's for the Daratumumab trial which is really exciting, via Joan Crawfords just giving page.
I think this has huge potential and needs a proper clinic trial.
Please share #mecfs
www.justgiving.com/crowdfunding...
I'm doing a birthday fundraiser (big birthday coming up next week). It's for the Daratumumab trial which is really exciting, via Joan Crawfords just giving page.
I think this has huge potential and needs a proper clinic trial.
Please share #mecfs
www.justgiving.com/crowdfunding...
Help raise £2500 to support promising medical research into ME – JustGiving Crowdfunding
Iʼm raising money to support promising medical research into ME. Support this JustGiving Crowdfunding Page.
www.justgiving.com
October 25, 2025 at 6:02 PM
Hi all
I'm doing a birthday fundraiser (big birthday coming up next week). It's for the Daratumumab trial which is really exciting, via Joan Crawfords just giving page.
I think this has huge potential and needs a proper clinic trial.
Please share #mecfs
www.justgiving.com/crowdfunding...
I'm doing a birthday fundraiser (big birthday coming up next week). It's for the Daratumumab trial which is really exciting, via Joan Crawfords just giving page.
I think this has huge potential and needs a proper clinic trial.
Please share #mecfs
www.justgiving.com/crowdfunding...
Reposted by Simon McGrath
1) Reading this review on fatigue in other diseases: it's notable how it manifests early in the illness (often before diagnosis), how it's often poorly explained (correlates poorly with pathology markers), yet is reported to be one of the most disabling symptoms.
October 29, 2025 at 8:23 AM
1) Reading this review on fatigue in other diseases: it's notable how it manifests early in the illness (often before diagnosis), how it's often poorly explained (correlates poorly with pathology markers), yet is reported to be one of the most disabling symptoms.
Reposted by Simon McGrath
UK: NIHR/MRC Showcase event for post acute infection conditions research
www.eventbrite.co.uk/e/nihrmrc-sh...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid #CFS #PwME
www.eventbrite.co.uk/e/nihrmrc-sh...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid #CFS #PwME
October 28, 2025 at 1:29 AM
UK: NIHR/MRC Showcase event for post acute infection conditions research
www.eventbrite.co.uk/e/nihrmrc-sh...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid #CFS #PwME
www.eventbrite.co.uk/e/nihrmrc-sh...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid #CFS #PwME
www.theguardian.com/society/2025...
@theguardian.com PLEASE correct this misleading headline – your article repeatedly states it's the total number of steps you take, NOT hitting a particular daily count that matters. The opposite of your headline.
@theguardian.com PLEASE correct this misleading headline – your article repeatedly states it's the total number of steps you take, NOT hitting a particular daily count that matters. The opposite of your headline.
Walking just 4,000 daily steps once a week cuts risk of early death in older people, study suggests
Researchers say the target significantly reduces risk of dying and lowers likelihood of cardiovascular disease
www.theguardian.com
October 22, 2025 at 6:36 AM
www.theguardian.com/society/2025...
@theguardian.com PLEASE correct this misleading headline – your article repeatedly states it's the total number of steps you take, NOT hitting a particular daily count that matters. The opposite of your headline.
@theguardian.com PLEASE correct this misleading headline – your article repeatedly states it's the total number of steps you take, NOT hitting a particular daily count that matters. The opposite of your headline.
Thank you, ME/CFS blog, for these brilliant summaries and insights. If you are interested in ME/CFS research, and what's important within it, take a look (and consider following them).
1) We watched the 2025 Stanford Symposium on ME/CFS and summarized many of the presentations.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
October 21, 2025 at 7:33 PM
Thank you, ME/CFS blog, for these brilliant summaries and insights. If you are interested in ME/CFS research, and what's important within it, take a look (and consider following them).
Reposted by Simon McGrath
1) We watched the 2025 Stanford Symposium on ME/CFS and summarized many of the presentations.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
October 21, 2025 at 3:58 PM
1) We watched the 2025 Stanford Symposium on ME/CFS and summarized many of the presentations.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
Reposted by Simon McGrath
5) The most interesting presentations were those that collected a lot of novel data without a particular hypothesis, such as the whole-body PET scans by Dr. Michell James.
IMHO, we need more data and measurements, less theory and speculation.
IMHO, we need more data and measurements, less theory and speculation.
October 21, 2025 at 3:58 PM
5) The most interesting presentations were those that collected a lot of novel data without a particular hypothesis, such as the whole-body PET scans by Dr. Michell James.
IMHO, we need more data and measurements, less theory and speculation.
IMHO, we need more data and measurements, less theory and speculation.
Great summary of striking work that:
1 Brings experts using cutting edge technology on other diseases to ME/CFS.
2 Finds bio action in many tissues eg brain, spinal cord, muscles, crucial if there's not much to to find in the blood.
3 Looks in living bodies, not samples in the lab
1 Brings experts using cutting edge technology on other diseases to ME/CFS.
2 Finds bio action in many tissues eg brain, spinal cord, muscles, crucial if there's not much to to find in the blood.
3 Looks in living bodies, not samples in the lab
1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
October 20, 2025 at 8:12 PM
Great summary of striking work that:
1 Brings experts using cutting edge technology on other diseases to ME/CFS.
2 Finds bio action in many tissues eg brain, spinal cord, muscles, crucial if there's not much to to find in the blood.
3 Looks in living bodies, not samples in the lab
1 Brings experts using cutting edge technology on other diseases to ME/CFS.
2 Finds bio action in many tissues eg brain, spinal cord, muscles, crucial if there's not much to to find in the blood.
3 Looks in living bodies, not samples in the lab
Reposted by Simon McGrath
1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
October 19, 2025 at 7:35 AM
1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
Interesting, elegant study suggesting a possible reason #longCovid is more common among women. For Covid infected mice, prolonged cognitive problems (measured e.g. by maze tests) – a 'proxy' for long Covid- were more common among females. As was a stronger immune response.
Relevant to ME/CFS?
Relevant to ME/CFS?
1) Impressive study from Johns Hopkins researchers.
They infected mice with SARS-CoV-2, found that female mice had a stronger immune response and more cognitive problems after 84 days than males, and that this was due to overexpression of genes such as Tlr7 on the X chromosome.
They infected mice with SARS-CoV-2, found that female mice had a stronger immune response and more cognitive problems after 84 days than males, and that this was due to overexpression of genes such as Tlr7 on the X chromosome.
October 20, 2025 at 8:28 AM
Interesting, elegant study suggesting a possible reason #longCovid is more common among women. For Covid infected mice, prolonged cognitive problems (measured e.g. by maze tests) – a 'proxy' for long Covid- were more common among females. As was a stronger immune response.
Relevant to ME/CFS?
Relevant to ME/CFS?
This is exactly what we need – scientists from other fields bringing their expertise to their bear.
The usual brilliant summary from ME/CFS Science. Who point out the cardiac issues seen in the model might mean this gene isn't relevant to ME/CFS.
The usual brilliant summary from ME/CFS Science. Who point out the cardiac issues seen in the model might mean this gene isn't relevant to ME/CFS.
1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.
They found that these fish swim less and have reduced oxygen consumption.
They found that these fish swim less and have reduced oxygen consumption.
October 18, 2025 at 9:56 AM
This is exactly what we need – scientists from other fields bringing their expertise to their bear.
The usual brilliant summary from ME/CFS Science. Who point out the cardiac issues seen in the model might mean this gene isn't relevant to ME/CFS.
The usual brilliant summary from ME/CFS Science. Who point out the cardiac issues seen in the model might mean this gene isn't relevant to ME/CFS.
Reposted by Simon McGrath
Poignant sequel to Rilke’s poem The Panther by Veronica Ashenhurst who has severe ME/CFS: www.westtrestlereview.com/wtr_septembe...
Rilke's Panther Befriends Me by Veronica Ashenhurst
Now, the cat soars through rooms
of sky, roars at stars, and recalls old years
of midnight hunts. He springs his unbound will,
and comes to condole with me. I can see
his paws, claws withdrawn like sw...
www.westtrestlereview.com
October 17, 2025 at 1:39 PM
Poignant sequel to Rilke’s poem The Panther by Veronica Ashenhurst who has severe ME/CFS: www.westtrestlereview.com/wtr_septembe...
Reposted by Simon McGrath
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
October 17, 2025 at 3:10 PM
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Reposted by Simon McGrath
“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.”
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.
October 16, 2025 at 6:36 PM
“Most of the people I’ve seen with #MECFS are so much sicker than my cancer patients.”
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.
Dr. Fridbjörn Sigurdsson, a former medical oncologist now focused on ME/CFS, speaking at the 2025 @investinmeresearch.bsky.social conference.
Thanks to @mecfsskeptic.bsky.social for finding the clip.
Reposted by Simon McGrath
1) 🇬🇧 For ME/CFS patients in the UK only: Action for ME has opened its 2025 Big Survey! Last time, it had more than 4000 respondents, but hopefully this one will be even bigger.
The deadline for submitting your response is 27 January 2026.
The deadline for submitting your response is 27 January 2026.
October 13, 2025 at 5:24 PM
1) 🇬🇧 For ME/CFS patients in the UK only: Action for ME has opened its 2025 Big Survey! Last time, it had more than 4000 respondents, but hopefully this one will be even bigger.
The deadline for submitting your response is 27 January 2026.
The deadline for submitting your response is 27 January 2026.
Reposted by Simon McGrath
Free talks at the IACFS/ME Conference for everyone!
(no ticket/ purchase necessary)
Link: nova.zoom.us/webinar/regi...
Copied from a new email from the IACFS/ME
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
(no ticket/ purchase necessary)
Link: nova.zoom.us/webinar/regi...
Copied from a new email from the IACFS/ME
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
October 15, 2025 at 12:35 PM
Free talks at the IACFS/ME Conference for everyone!
(no ticket/ purchase necessary)
Link: nova.zoom.us/webinar/regi...
Copied from a new email from the IACFS/ME
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
(no ticket/ purchase necessary)
Link: nova.zoom.us/webinar/regi...
Copied from a new email from the IACFS/ME
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Reposted by Simon McGrath
1) 🇬🇧 The NIHR and MRC are hosting a free showcase event for research on post-acute infection conditions, including ME/CFS and long COVID.
It takes place in London on November 6, 10 am - 4:30 pm GMT.
It takes place in London on November 6, 10 am - 4:30 pm GMT.
October 16, 2025 at 7:44 AM
1) 🇬🇧 The NIHR and MRC are hosting a free showcase event for research on post-acute infection conditions, including ME/CFS and long COVID.
It takes place in London on November 6, 10 am - 4:30 pm GMT.
It takes place in London on November 6, 10 am - 4:30 pm GMT.
Reposted by Simon McGrath
The secret to the naked mole-rats’ extraordinarily long life may lie in subtle changes to just four amino acids, researchers report in Science. https://scim.ag/3IUquTb
A cGAS-mediated mechanism in naked mole-rats potentiates DNA repair and delays aging
Efficient DNA repair might make possible the longevity of naked mole-rats. However, whether they have distinctive mechanisms to optimize functions of DNA repair suppressors is unclear. We find that na...
scim.ag
October 15, 2025 at 7:17 PM
The secret to the naked mole-rats’ extraordinarily long life may lie in subtle changes to just four amino acids, researchers report in Science. https://scim.ag/3IUquTb