Good that there is someone from within the NHS prepared to speak out & stand up for ME/CFS patients. Were sick of being gaslighted by the Wessely et al.
Thank you so much. Here in New Zealand in tears about feeling unable to get out of bed. Incredibly overwhelmed by the thought of how I'll manage. Listening to you two helps me feel not alone and not entirely hopeless.
Shout out from a small island (Isle of Man) from a fellow sufferer. I'm not sure what support is like in NZ but Emerge Australia have some really good concise resources about pacing and how to explain things to family and work. I also really like Dr Shepherd's advice at the ME Association UK.
Yep after 16 years basically alone the past 2. Dying with bedsores all alone sadly could happen. I continue to keep my flat. Getting out of necessity for groceries ECT. If I can. Currently happy when I can brush my teeth. Have to listen to these videos for relief because quite honestly it's still hard for me to believe the debilitating aspects of this set of symptoms. Following my body, eating good organic food, Drinking fresh water, and basically going from bed to couch and the occasional errands are all a part of healing myself
I have CFS and my symptoms initially started just as you described. EBV reactivation, bedbound, once lived a very active lifesyle... The anxiety definitely started after being unheard, dismissed and even laughed at by medical professionals. 3 years later, I am doing much better. I was diagnosed with a spondyloarthropathy and am taking methotrexate. My energy has improved greatly. Yet, I am not completely recovered, I have to maintain an extremely balanced lifestyle to ensure that I do not stress or overwork my body.
The push by NICE guidelines to keep the patient going and to do 'graded exercise' is completely wrong. 'Graded exercise' I laughed - I could not even get down the stairs - I had to stagger to the bathroom - at times unable to get there at all .... and so on. So when a GP says the way is graded exercise - ignore it. The fact I was pushed by my GP for so long to keep going to work ended in my complete collapse and hence 20 years on never returning to work. I feel to this day that if, during the early onset, I had been able to rest and be off work for 6 months or so I may have ended up getting back to work (albeit with someone looking after my home and shopping for me). By the time I got to see an eminent Neurologist who confirmed diagnosis of ME I had been wrecked physically and mentally.
Thank you Nina! You are an amazing asset to the ME patient community. I got ME when my first child was just 3. Mothering two small children through ME is a daily struggle, continuous guilt that you cant meet their needs in the way you want to. Hearing about Nina's grandmother is desperately sad but also fascinating. My mother has ME and my daughter (now 10) was diagnosed 1.5 years ago. 3 generations. I am going to talk to my mother and see if she can recall any possible ME in former generations of her family. Thanks again to Nina for her fantastic work
I'd love to know more about your module for GPs so our GPs here (Isle of Man) could use it. We're having a debate in our Parliament on ME next month. "The ignorance of the 1950s is still being shown today." Sadly it very much is.
Have you heard of Dr Raymond Perrin? He's developed an interesting treatment and a physical diagnosis. He's continuing studies with NHS trusts and has some interesting discoveries. Many thanks for the videos.
Good that there is someone from within the NHS prepared to speak out & stand up for ME/CFS patients. Were sick of being gaslighted by the Wessely et al.
Thank you so much. Here in New Zealand in tears about feeling unable to get out of bed. Incredibly overwhelmed by the thought of how I'll manage. Listening to you two helps me feel not alone and not entirely hopeless.
Shout out from a small island (Isle of Man) from a fellow sufferer. I'm not sure what support is like in NZ but Emerge Australia have some really good concise resources about pacing and how to explain things to family and work. I also really like Dr Shepherd's advice at the ME Association UK.
Yep after 16 years basically alone the past 2. Dying with bedsores all alone sadly could happen. I continue to keep my flat. Getting out of necessity for groceries ECT. If I can. Currently happy when I can brush my teeth. Have to listen to these videos for relief because quite honestly it's still hard for me to believe the debilitating aspects of this set of symptoms.
Following my body, eating good organic food, Drinking fresh water, and basically going from bed to couch and the occasional errands are all a part of healing myself
Sorry to hear that, 16 years is a long time to suffer, good luck and all the best.
@@rowdyblakley8669 thank you Rowdy I'm also 61 years old. I'm thinking get busy living or get busy dying. I wish you all the Best!
Nina is a great spokesperson for ME patients 😊
I have CFS and my symptoms initially started just as you described. EBV reactivation, bedbound, once lived a very active lifesyle...
The anxiety definitely started after being unheard, dismissed and even laughed at by medical professionals. 3 years later, I am doing much better. I was diagnosed with a spondyloarthropathy and am taking methotrexate. My energy has improved greatly. Yet, I am not completely recovered, I have to maintain an extremely balanced lifestyle to ensure that I do not stress or overwork my body.
I had Mononucleosis too. I also have co-morbid Endometriosis.
The push by NICE guidelines to keep the patient going and to do 'graded exercise' is completely wrong. 'Graded exercise' I laughed - I could not even get down the stairs - I had to stagger to the bathroom - at times unable to get there at all .... and so on. So when a GP says the way is graded exercise - ignore it. The fact I was pushed by my GP for so long to keep going to work ended in my complete collapse and hence 20 years on never returning to work. I feel to this day that if, during the early onset, I had been able to rest and be off work for 6 months or so I may have ended up getting back to work (albeit with someone looking after my home and shopping for me). By the time I got to see an eminent Neurologist who confirmed diagnosis of ME I had been wrecked physically and mentally.
Thank you Nina! You are an amazing asset to the ME patient community.
I got ME when my first child was just 3. Mothering two small children through ME is a daily struggle, continuous guilt that you cant meet their needs in the way you want to.
Hearing about Nina's grandmother is desperately sad but also fascinating. My mother has ME and my daughter (now 10) was diagnosed 1.5 years ago. 3 generations. I am going to talk to my mother and see if she can recall any possible ME in former generations of her family.
Thanks again to Nina for her fantastic work
Thank you..so good to hear of her journey as a doctor with ME/CFS Most of my battles have been with the medical profession.
I'd love to know more about your module for GPs so our GPs here (Isle of Man) could use it. We're having a debate in our Parliament on ME next month.
"The ignorance of the 1950s is still being shown today." Sadly it very much is.
In case you missed it, the URL to access the module appears in the video at 13:01
@@andydc6421 Thank you so much. I did miss it but now have been able to write to my GP to see if they can access the course.
Have you heard of Dr Raymond Perrin? He's developed an interesting treatment and a physical diagnosis. He's continuing studies with NHS trusts and has some interesting discoveries.
Many thanks for the videos.