Mads
@blueforpwme.bsky.social
🇬🇧DxwM.E.1995-EBV&now LC ex-dancer,⛱️lifeguard,performer, working on writing my 1st novel to rep #pwME! I’m a dreamer,nature lover & surfer 🏄♂️🛹1-2 times a yr if I’m lucky. Many undiagnosed comorbidities! Ie.MCAS.OI/DYSAUTONOMIA.EDS. GASTRO.ADHD.CHIARI/SPINAL🦋
#CloudShrine Update:
Our first meeting went well, despite two attendees off sick.
I’m meeting in person towards the end of this month, visiting the space & to try out one of the mats, and to determine next steps.
Meanwhile marketing will be working on spreading the word across #SouthTyneside
Our first meeting went well, despite two attendees off sick.
I’m meeting in person towards the end of this month, visiting the space & to try out one of the mats, and to determine next steps.
Meanwhile marketing will be working on spreading the word across #SouthTyneside
November 7, 2025 at 9:20 AM
#CloudShrine Update:
Our first meeting went well, despite two attendees off sick.
I’m meeting in person towards the end of this month, visiting the space & to try out one of the mats, and to determine next steps.
Meanwhile marketing will be working on spreading the word across #SouthTyneside
Our first meeting went well, despite two attendees off sick.
I’m meeting in person towards the end of this month, visiting the space & to try out one of the mats, and to determine next steps.
Meanwhile marketing will be working on spreading the word across #SouthTyneside
November 1, 2025 at 6:28 PM
I’m finally meeting National Trust via a teams call on Monday to discuss my Cloud.Shrine proposal
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
November 1, 2025 at 6:13 PM
I’m finally meeting National Trust via a teams call on Monday to discuss my Cloud.Shrine proposal
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
The 1st step will be to garner interest & ability of #pwME / #LongCovid & any other energy limiting disease to attend. It’s focused towards those with PEM primarily. It will be a #HEPA filtered space ☁️
It’s so emotional seeing all these donations and messages, giving me so much hope, knowing how many of us are out there and supporting each other from afar. Maybe when we’re all gone from this world we might all meet in heaven for those long overdue hugs and love ❤️
September 1, 2025 at 12:48 PM
It’s so emotional seeing all these donations and messages, giving me so much hope, knowing how many of us are out there and supporting each other from afar. Maybe when we’re all gone from this world we might all meet in heaven for those long overdue hugs and love ❤️
Link to donate for LEGAL ACTION : #pwME - Currently at £4754 11:15 31/08/2025
crowdjustice.com/case/justice...
#Justice #JusticeForME
#MyalgicEncephalomyelitis
PLEASE SHARE IF YOU CARE!
(If you haven’t already)
Thank you 💙
crowdjustice.com/case/justice...
#Justice #JusticeForME
#MyalgicEncephalomyelitis
PLEASE SHARE IF YOU CARE!
(If you haven’t already)
Thank you 💙
August 31, 2025 at 10:47 AM
Link to donate for LEGAL ACTION : #pwME - Currently at £4754 11:15 31/08/2025
crowdjustice.com/case/justice...
#Justice #JusticeForME
#MyalgicEncephalomyelitis
PLEASE SHARE IF YOU CARE!
(If you haven’t already)
Thank you 💙
crowdjustice.com/case/justice...
#Justice #JusticeForME
#MyalgicEncephalomyelitis
PLEASE SHARE IF YOU CARE!
(If you haven’t already)
Thank you 💙
July 19, 2025 is the deadline for heads of state of the 192 of the 196 nations that are parties to the International Health Regulation to reject the 2024 amendments. #IHR
youtu.be/VO8HVTSGLTI?...
youtu.be/VO8HVTSGLTI?...
July 18, 2025 at 12:56 PM
July 19, 2025 is the deadline for heads of state of the 192 of the 196 nations that are parties to the International Health Regulation to reject the 2024 amendments. #IHR
youtu.be/VO8HVTSGLTI?...
youtu.be/VO8HVTSGLTI?...
These items of clothing represent those of us unable to participate fully in life: in the clothes, with the identity, & sadly without proper representation in society… be that achieved through media, tv, healthcare or national campaigns, as we see others represented with chronic diseases #pwME #SOS
May 9, 2025 at 8:56 AM
#JustOneWish - to be able to wear the clothes again that make us feel like who we really are. For some of us this is vital to our identity which we lose most of when we become missing from life.
#pwME
#MyalgicEncephalomyelitis
#MEAwarenessMonth
#pwME
#MyalgicEncephalomyelitis
#MEAwarenessMonth
May 9, 2025 at 8:52 AM
#JustOneWish - to be able to wear the clothes again that make us feel like who we really are. For some of us this is vital to our identity which we lose most of when we become missing from life.
#pwME
#MyalgicEncephalomyelitis
#MEAwarenessMonth
#pwME
#MyalgicEncephalomyelitis
#MEAwarenessMonth
@thriftvip & @thrift_stop_pop_shop are going #BlueForME this year, on instagram, sharing a selection of blue 🦋 items of apparel available to purchase, with a percentage of those sales going towards M.E. research.
I’m keeping my campaign there as it’s too much to do here too
🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋
I’m keeping my campaign there as it’s too much to do here too
🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋
May 9, 2025 at 8:51 AM
@thriftvip & @thrift_stop_pop_shop are going #BlueForME this year, on instagram, sharing a selection of blue 🦋 items of apparel available to purchase, with a percentage of those sales going towards M.E. research.
I’m keeping my campaign there as it’s too much to do here too
🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋
I’m keeping my campaign there as it’s too much to do here too
🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋🩵🦋
I’m currently working on putting together a proposal atm so a bit quiet on here … progress is slow but currently steady with lots of resting in between. 🩵
I’m also preparing a few bits for #MEAwareness in May 🦋 … love and waves to all 🌊🌊🌊
I’m also preparing a few bits for #MEAwareness in May 🦋 … love and waves to all 🌊🌊🌊
April 16, 2025 at 11:22 AM
I’m currently working on putting together a proposal atm so a bit quiet on here … progress is slow but currently steady with lots of resting in between. 🩵
I’m also preparing a few bits for #MEAwareness in May 🦋 … love and waves to all 🌊🌊🌊
I’m also preparing a few bits for #MEAwareness in May 🦋 … love and waves to all 🌊🌊🌊
Finally, after 3 long years of new and worsening symptoms following #SARSCOV2 infections I got an ECG…
…. Then I got a letter to say my referral to a #LongCovid clinic is cancelled as there aren’t any
WTF? We’re STILL IN A PANDEMIC 😷 IDIOTIC MOVE
@emmalewellbuck.bsky.social
#PublicHealth
…. Then I got a letter to say my referral to a #LongCovid clinic is cancelled as there aren’t any
WTF? We’re STILL IN A PANDEMIC 😷 IDIOTIC MOVE
@emmalewellbuck.bsky.social
#PublicHealth
March 24, 2025 at 7:46 AM
Finally, after 3 long years of new and worsening symptoms following #SARSCOV2 infections I got an ECG…
…. Then I got a letter to say my referral to a #LongCovid clinic is cancelled as there aren’t any
WTF? We’re STILL IN A PANDEMIC 😷 IDIOTIC MOVE
@emmalewellbuck.bsky.social
#PublicHealth
…. Then I got a letter to say my referral to a #LongCovid clinic is cancelled as there aren’t any
WTF? We’re STILL IN A PANDEMIC 😷 IDIOTIC MOVE
@emmalewellbuck.bsky.social
#PublicHealth
LOVE AND SOLIDARITY TO THOSE MISSING FROM LIFE AS WE LIVE MOST OF OUR LIVES ONLINE … 🩵
March 15, 2025 at 11:25 AM
LOVE AND SOLIDARITY TO THOSE MISSING FROM LIFE AS WE LIVE MOST OF OUR LIVES ONLINE … 🩵
Just a little bird sending some
L🩵Ve to you…. Xx
L🩵Ve to you…. Xx
March 14, 2025 at 6:52 PM
Just a little bird sending some
L🩵Ve to you…. Xx
L🩵Ve to you…. Xx
Just emailed MP
@emmalewellbuck.bsky.social
with my story as a #pwME to highlight why it’s so important to #ReportNonPharmaHarms
I hope
#WesStreeting
can make the change we all need to see by making a fair & balanced reporting system
@mefoggydog.bsky.social
#ShakeItUp
#PatientSafetyUK
#NHS
@emmalewellbuck.bsky.social
with my story as a #pwME to highlight why it’s so important to #ReportNonPharmaHarms
I hope
#WesStreeting
can make the change we all need to see by making a fair & balanced reporting system
@mefoggydog.bsky.social
#ShakeItUp
#PatientSafetyUK
#NHS
March 6, 2025 at 12:28 PM
Just emailed MP
@emmalewellbuck.bsky.social
with my story as a #pwME to highlight why it’s so important to #ReportNonPharmaHarms
I hope
#WesStreeting
can make the change we all need to see by making a fair & balanced reporting system
@mefoggydog.bsky.social
#ShakeItUp
#PatientSafetyUK
#NHS
@emmalewellbuck.bsky.social
with my story as a #pwME to highlight why it’s so important to #ReportNonPharmaHarms
I hope
#WesStreeting
can make the change we all need to see by making a fair & balanced reporting system
@mefoggydog.bsky.social
#ShakeItUp
#PatientSafetyUK
#NHS
#ShakeItUp - with thanks to @mefoggydog.bsky.social for her work on this 🩵 #BePartOfChange
This is paperwork I’ve kept from 17 years ago when I was harmed by following GET on NHS - I trusted & beleieved them
Full story with text on my instagram page @madeleinethriftvip
#GET #CBT #ReportTheHarm
This is paperwork I’ve kept from 17 years ago when I was harmed by following GET on NHS - I trusted & beleieved them
Full story with text on my instagram page @madeleinethriftvip
#GET #CBT #ReportTheHarm
March 5, 2025 at 2:17 PM
#ShakeItUp - with thanks to @mefoggydog.bsky.social for her work on this 🩵 #BePartOfChange
This is paperwork I’ve kept from 17 years ago when I was harmed by following GET on NHS - I trusted & beleieved them
Full story with text on my instagram page @madeleinethriftvip
#GET #CBT #ReportTheHarm
This is paperwork I’ve kept from 17 years ago when I was harmed by following GET on NHS - I trusted & beleieved them
Full story with text on my instagram page @madeleinethriftvip
#GET #CBT #ReportTheHarm
Made it out today,not seen anyone I know since Christmas because I live far away due to health/societal bs…today I walked amongst other aliens, being the only one masked, being stared at making me feel more alone&isolated than ever but cannot risk more infection #BrainInflammation been off the scale
February 28, 2025 at 5:24 PM
Made it out today,not seen anyone I know since Christmas because I live far away due to health/societal bs…today I walked amongst other aliens, being the only one masked, being stared at making me feel more alone&isolated than ever but cannot risk more infection #BrainInflammation been off the scale
Thank you to all the wonderful contributors from the M.E community!
L🩵Ve & Light to you all
Here’s hoping 2025 will bring us wonderful news, compassionate allies and more hope than we’ve ever had before from those working behind the scenes on the science.
www.thriftvip.co.uk/articles/on-...
L🩵Ve & Light to you all
Here’s hoping 2025 will bring us wonderful news, compassionate allies and more hope than we’ve ever had before from those working behind the scenes on the science.
www.thriftvip.co.uk/articles/on-...
February 2, 2025 at 2:47 PM
Thank you to all the wonderful contributors from the M.E community!
L🩵Ve & Light to you all
Here’s hoping 2025 will bring us wonderful news, compassionate allies and more hope than we’ve ever had before from those working behind the scenes on the science.
www.thriftvip.co.uk/articles/on-...
L🩵Ve & Light to you all
Here’s hoping 2025 will bring us wonderful news, compassionate allies and more hope than we’ve ever had before from those working behind the scenes on the science.
www.thriftvip.co.uk/articles/on-...
Here as in UK that meant and various other places
Meanwhile enjoying listening to the wild birds. Be vigilant 🦢
Meanwhile enjoying listening to the wild birds. Be vigilant 🦢
January 27, 2025 at 8:48 AM
Here as in UK that meant and various other places
Meanwhile enjoying listening to the wild birds. Be vigilant 🦢
Meanwhile enjoying listening to the wild birds. Be vigilant 🦢
#BigGardenBirdwatch …. Managed just over an hour out on Saturday… quarantines in place here for North Yorkshire to keep birds indoors. Really hope we witness a H5N1 free year, especially after the Puffins we’re at risk only a year or 2 ago I’m Northumberland 🙏🏼 for the wild birds 🦢
January 27, 2025 at 8:44 AM
#BigGardenBirdwatch …. Managed just over an hour out on Saturday… quarantines in place here for North Yorkshire to keep birds indoors. Really hope we witness a H5N1 free year, especially after the Puffins we’re at risk only a year or 2 ago I’m Northumberland 🙏🏼 for the wild birds 🦢
And with many thanks to @daniellebeckman.bsky.social for allowing me to use one of her brilliant award winning images in my article!
Part Two coming soon 🩵
Part Two coming soon 🩵
January 17, 2025 at 2:07 PM
And with many thanks to @daniellebeckman.bsky.social for allowing me to use one of her brilliant award winning images in my article!
Part Two coming soon 🩵
Part Two coming soon 🩵
January 1, 2025 at 12:32 PM
🩵🦋💙
This is my Maeve stone …
Selected from the beach where I live on a day I decided to get out with my board to attempt a surf of sorts in the name of Maeve. This stone is complex and beautiful and has many facets to it. It represents the strength of all those who have fought despite the system 💙
This is my Maeve stone …
Selected from the beach where I live on a day I decided to get out with my board to attempt a surf of sorts in the name of Maeve. This stone is complex and beautiful and has many facets to it. It represents the strength of all those who have fought despite the system 💙
December 18, 2024 at 12:47 PM
🩵🦋💙
This is my Maeve stone …
Selected from the beach where I live on a day I decided to get out with my board to attempt a surf of sorts in the name of Maeve. This stone is complex and beautiful and has many facets to it. It represents the strength of all those who have fought despite the system 💙
This is my Maeve stone …
Selected from the beach where I live on a day I decided to get out with my board to attempt a surf of sorts in the name of Maeve. This stone is complex and beautiful and has many facets to it. It represents the strength of all those who have fought despite the system 💙
This is what i get when I click the link:
November 25, 2024 at 9:22 AM
This is what i get when I click the link:
Having to move furniture around using up so many spoons today,channelling all my anger energy&in the process smashed a load of glasses. Hard being on your own. This is gonna hurt my body in a few days.Adrenalined af with all the stress so hoping for a calm& uneventful weekend
Hope yours is peaceful💙
Hope yours is peaceful💙
November 15, 2024 at 6:47 PM
Having to move furniture around using up so many spoons today,channelling all my anger energy&in the process smashed a load of glasses. Hard being on your own. This is gonna hurt my body in a few days.Adrenalined af with all the stress so hoping for a calm& uneventful weekend
Hope yours is peaceful💙
Hope yours is peaceful💙
Today… more damp to contend with! Sigh. Mycelium creates beautiful patterns but not healthy esp for #pwME
£4000 spent on damp works prior to moving in 2 yrs ago but it continues to dominate. Looks like it’s time to move again soon.Cannot cope with more upheaval yet, moved so many times for health
£4000 spent on damp works prior to moving in 2 yrs ago but it continues to dominate. Looks like it’s time to move again soon.Cannot cope with more upheaval yet, moved so many times for health
November 15, 2024 at 6:43 PM
Today… more damp to contend with! Sigh. Mycelium creates beautiful patterns but not healthy esp for #pwME
£4000 spent on damp works prior to moving in 2 yrs ago but it continues to dominate. Looks like it’s time to move again soon.Cannot cope with more upheaval yet, moved so many times for health
£4000 spent on damp works prior to moving in 2 yrs ago but it continues to dominate. Looks like it’s time to move again soon.Cannot cope with more upheaval yet, moved so many times for health