Dan Wyke
@danwyke.bsky.social
Severe M.E. patient, person-centred counsellor (currently not practicing), recovering poet (Rack & Waterloo Press)
Statin update: I've been almost entirely free from nerve pain since stopping statins a week ago. Unexpectedly my Visible HRV reading has also improved - climbing into the 60s for the first time ever. #MyalgicEncephalomyelitis #MECFS
February 19, 2026 at 1:45 PM
Statin update: I've been almost entirely free from nerve pain since stopping statins a week ago. Unexpectedly my Visible HRV reading has also improved - climbing into the 60s for the first time ever. #MyalgicEncephalomyelitis #MECFS
Another young woman is at risk of being starved to death in an NHS hospital, but thank god none of her (usually male) consultants have to learn something new, or heaven forbid, rethink their prejudices about #MyalgicEncephalomyelitis. #MECFS
February 18, 2026 at 8:31 PM
Another young woman is at risk of being starved to death in an NHS hospital, but thank god none of her (usually male) consultants have to learn something new, or heaven forbid, rethink their prejudices about #MyalgicEncephalomyelitis. #MECFS
6/ Take heart from campaigners for social justice, like the late Rev. Jesse Jackson, who said that just by finding a way to "keep hope alive", you are expressing a worthwhile sense of defiance. 4/4
February 18, 2026 at 11:19 AM
6/ Take heart from campaigners for social justice, like the late Rev. Jesse Jackson, who said that just by finding a way to "keep hope alive", you are expressing a worthwhile sense of defiance. 4/4
2/ Follow allies in the research and clinical community;
3/ Write to your MP about the cruelty, neglect and abuse faced by people with ME;
4/ Reach out to patients who are struggling;
5/ Share easy-to-follow medical information with healthcare providers; and...
3/4
3/ Write to your MP about the cruelty, neglect and abuse faced by people with ME;
4/ Reach out to patients who are struggling;
5/ Share easy-to-follow medical information with healthcare providers; and...
3/4
February 18, 2026 at 11:19 AM
2/ Follow allies in the research and clinical community;
3/ Write to your MP about the cruelty, neglect and abuse faced by people with ME;
4/ Reach out to patients who are struggling;
5/ Share easy-to-follow medical information with healthcare providers; and...
3/4
3/ Write to your MP about the cruelty, neglect and abuse faced by people with ME;
4/ Reach out to patients who are struggling;
5/ Share easy-to-follow medical information with healthcare providers; and...
3/4
Given the seemingly implacable opposition people with ME face, it can be tempting to disengage. If you're struggling to keep hope alive, here are some simple actions you can take:
1/ Donate to research or crowdfunding for patients in need;
2/4
1/ Donate to research or crowdfunding for patients in need;
2/4
February 18, 2026 at 11:19 AM
Given the seemingly implacable opposition people with ME face, it can be tempting to disengage. If you're struggling to keep hope alive, here are some simple actions you can take:
1/ Donate to research or crowdfunding for patients in need;
2/4
1/ Donate to research or crowdfunding for patients in need;
2/4
I despair of the dogmatism of the medical profession and the cruelty shown by so many members of the public. It's a terrible burden for patients whose bodies are already broken. 1/4
February 18, 2026 at 11:19 AM
I despair of the dogmatism of the medical profession and the cruelty shown by so many members of the public. It's a terrible burden for patients whose bodies are already broken. 1/4
This is all starting to sound ominously familiar. Is there going to be another preventable death because the government refuses to establish a national specialist service for very severe ME? The failings here are criminal. #MyalgicEncephalomyelitis #MECFS
archive.ph/2026.02.15-2...
archive.ph/2026.02.15-2...
archive.ph
February 16, 2026 at 2:54 PM
This is all starting to sound ominously familiar. Is there going to be another preventable death because the government refuses to establish a national specialist service for very severe ME? The failings here are criminal. #MyalgicEncephalomyelitis #MECFS
archive.ph/2026.02.15-2...
archive.ph/2026.02.15-2...
A day blessedly free from PEM and pain.
February 15, 2026 at 8:03 PM
A day blessedly free from PEM and pain.
I'm wondering if statins could be responsible for my recent deterioration which has left me with less energy and more myalgia/neuralgia. I don't know why it didn't occur to me sooner. I'm going to stop taking them and boost my CoQ10 intake for 2-3 weeks...🤞 www.mdpi.com/1422-0067/22...
www.mdpi.com
February 14, 2026 at 12:31 PM
I'm wondering if statins could be responsible for my recent deterioration which has left me with less energy and more myalgia/neuralgia. I don't know why it didn't occur to me sooner. I'm going to stop taking them and boost my CoQ10 intake for 2-3 weeks...🤞 www.mdpi.com/1422-0067/22...
Tried to take a shower yesterday so of course I'm wiped out, in pain and feeling wretched today. Post-exertional malaise (PEM) is such an inadequate term for the immune, metabolic, and neuromuscular dysregulation people with ME/CFS suffer long after they've completed an activity.
February 13, 2026 at 1:18 PM
Tried to take a shower yesterday so of course I'm wiped out, in pain and feeling wretched today. Post-exertional malaise (PEM) is such an inadequate term for the immune, metabolic, and neuromuscular dysregulation people with ME/CFS suffer long after they've completed an activity.
Reposted by Dan Wyke
Go for it. I don't even care any more.
August 2, 2025 at 5:13 AM
Go for it. I don't even care any more.
It's interesting that the GMC is reportedly concerned about doctors recommending off-label treatments for #MECFS but it gives them a free pass for failing to implement NICE guidelines. 🤨 #MyalgicEncephalomyelitis
February 12, 2026 at 7:37 AM
It's interesting that the GMC is reportedly concerned about doctors recommending off-label treatments for #MECFS but it gives them a free pass for failing to implement NICE guidelines. 🤨 #MyalgicEncephalomyelitis
That's almost certainly part of the picture.
February 11, 2026 at 6:53 PM
That's almost certainly part of the picture.
Reposted by Dan Wyke
Urgent Mutual Aid Request
PM is an immunocompromised trans person w severe ME in immediate need of longterm (2+ yrs) housing in Chicago, which must be:
- power wheelchair accessible
- quiet, mold free, extremely covid cautious
Please share & DM if you can help.
#HelpSky #MutualAid #HelpFolksLive
PM is an immunocompromised trans person w severe ME in immediate need of longterm (2+ yrs) housing in Chicago, which must be:
- power wheelchair accessible
- quiet, mold free, extremely covid cautious
Please share & DM if you can help.
#HelpSky #MutualAid #HelpFolksLive
February 11, 2026 at 4:32 PM
Urgent Mutual Aid Request
PM is an immunocompromised trans person w severe ME in immediate need of longterm (2+ yrs) housing in Chicago, which must be:
- power wheelchair accessible
- quiet, mold free, extremely covid cautious
Please share & DM if you can help.
#HelpSky #MutualAid #HelpFolksLive
PM is an immunocompromised trans person w severe ME in immediate need of longterm (2+ yrs) housing in Chicago, which must be:
- power wheelchair accessible
- quiet, mold free, extremely covid cautious
Please share & DM if you can help.
#HelpSky #MutualAid #HelpFolksLive
Nerve pain in my arms has returned since my last creatine-related post so I don't think I got away with it after all. It's also caused some sleep disruption and gastrointestinal discomfort so I'm probably not going to persevere with it for now. Not enough upside.
February 11, 2026 at 3:55 PM
Nerve pain in my arms has returned since my last creatine-related post so I don't think I got away with it after all. It's also caused some sleep disruption and gastrointestinal discomfort so I'm probably not going to persevere with it for now. Not enough upside.
Not feeling great today. I guess it's only to be expected when you've had a neuro-immune disease for 16 years which has been completely ignored by the medical profession. 😞 #MyalgicEncephalomyelitis #MECFS
February 11, 2026 at 2:13 PM
Not feeling great today. I guess it's only to be expected when you've had a neuro-immune disease for 16 years which has been completely ignored by the medical profession. 😞 #MyalgicEncephalomyelitis #MECFS
Creatine update: 100mg was low enough to avoid aggravating nerve pain but not enough to alleviate brain fog. Back to the drawing board.
February 11, 2026 at 11:27 AM
Creatine update: 100mg was low enough to avoid aggravating nerve pain but not enough to alleviate brain fog. Back to the drawing board.
Trying Creatine again. Microdosing. 100mg instead of 1g. 🤞
February 10, 2026 at 11:12 AM
Trying Creatine again. Microdosing. 100mg instead of 1g. 🤞
'A Duty Forsaken: The Legal and Ethical Abandonment of ME/CFS Patients'
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
February 10, 2026 at 11:07 AM
'A Duty Forsaken: The Legal and Ethical Abandonment of ME/CFS Patients'
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
Thanks to Jenny Wilson for preparing this summary of a longer document she is working on. I'm going to send a copy to my MP Beccy Cooper. Please do the same if you can manage it. #MyalgicEncephalomyelitis #MECFS
With a heavy heart I've decided not to renew my annual payment to the Counselling Directory (where I advertise). I've not been able to work at all since March '25 and my cognitive energy in particular has declined so much that I can't imagine being able to offer consistent support any time soon. 😞
February 8, 2026 at 8:23 AM
With a heavy heart I've decided not to renew my annual payment to the Counselling Directory (where I advertise). I've not been able to work at all since March '25 and my cognitive energy in particular has declined so much that I can't imagine being able to offer consistent support any time soon. 😞
Brain fog has returned but the pain has subsided. Oh, well... 🙄
February 7, 2026 at 1:32 PM
Brain fog has returned but the pain has subsided. Oh, well... 🙄
Creatine update: 1g: definite improvement in cognitive energy and clarity HOWEVER it also aggravated nerve pain in my limbs - which is a thing that can happen, according to AI, as water is drawn into muscle cells and presses against the nerves. Not sure whether to continue or keep for emergencies.
February 7, 2026 at 8:42 AM
Creatine update: 1g: definite improvement in cognitive energy and clarity HOWEVER it also aggravated nerve pain in my limbs - which is a thing that can happen, according to AI, as water is drawn into muscle cells and presses against the nerves. Not sure whether to continue or keep for emergencies.
I've never liked the sensation of water entering my muscles that I get when taking Creatine, but it shows up so many times in people's stacks that I'm going to give it another go. Mainly hoping it gives my brain some energy. #MyalgicEncephalomyelitis #MECFS
February 6, 2026 at 12:21 PM
I've never liked the sensation of water entering my muscles that I get when taking Creatine, but it shows up so many times in people's stacks that I'm going to give it another go. Mainly hoping it gives my brain some energy. #MyalgicEncephalomyelitis #MECFS
Uh-oh, I suddenly feel OK. That's not a good sign. 😬
February 6, 2026 at 8:49 AM
Uh-oh, I suddenly feel OK. That's not a good sign. 😬