Thank you, David, for working on behalf of ME & LC patients. Your commitment to our cause is incredibly appreciated, as you have literally become a spokesperson for ME/LC.
I am very concerned about the number of people with ME & LC who are diagnosed with MCAS, including myself. So many people outside of our community have also been diagnosed as I’ve discovered through the Mast Cell Action Facebook group. I’m concerned about the high risk of malnutrition and ultimately the possibility of death.
I really want NICE to accept MCAS (Mast Cell Activation Syndrome) as an illness and provide guidelines. Despite so many pwME/LC developing MCAS, there is virtually no treatment within the NHS. We have to go private to get treatment and support.
I believe MCAS to be the main driver of developing malnutrition, that is, starvation. So many of us, including myself, either have very limited foods which we tolerate or none at all. Often for many, gastroparesis is also involved.
I was admitted to hospital in mid-October for preventative treatment for malnutrition. My GP requested gut rest and alternative feeding via TPN. They refused the feed, but I was admitted. To cut a long story short, their recommended supplements did not work. Then their recommended low histamine, low FODMAP & gluten-free diet actually made me a lot worse, breaking out in hives and my airway being compromised. They wouldn’t liaise with Dr. Weir until after I was discharged and then only to inform him about my admission.
I was discharged in a worse condition than when I went in. The diagnosis was severe constipation, and MCAS was something they knew nothing about. My tryptase test was negative, which is very common.
So, how can we get NICE to accept MCAS because too many patients are in a state of malnutrition? Patients can’t eat because of their symptoms, or like myself, eat small amounts but are in severe pain as a result!
This was purely to get a big fatigue study on the books which purports to be about CFS.
Essentially framing the debate as if CFS were coined for fatigue rather than the immune evidence which was the real reason the CDC created this syndrome.
For so long as people bicker about fatigue, this serves the purposes of those who wish to have you bicker about fatigue to the total exclusion of immune evidence.
Thank you for your important work on this issue. When I underwent "treatment" at the West Yorkshire ME clinic the CBT and Get made me more ill leading me to make an official complaint to the CQC.
Sadly, it appears medical dogma is still rife in this country as some of the Royal colleges opposed the new NICE guideline which dropped these quack therapies.
We have a long way to go but together we can make a difference.
On a slightly different note there is room for optimism if RFK jnr gets appointmented as US health secretary. Maybe the pernicious influence of big pharma will be severely reduced and doctors committed to following scientific evidence will get free rein. The ME community in America should reach out to RFK as the previous administration was not devoting the extra funds necessary into ME research as shown by the NIH road map for ME research adopted last year. I'm a socialist and to be honest don't care that RFK is a trump appointee. People have to put their political views to one side on this issue.
Many thanks to David for his sound scientific support for people with ME and long COVID.
Thank you
Thank you, David, for working on behalf of ME & LC patients. Your commitment to our cause is incredibly appreciated, as you have literally become a spokesperson for ME/LC.
I am very concerned about the number of people with ME & LC who are diagnosed with MCAS, including myself. So many people outside of our community have also been diagnosed as I’ve discovered through the Mast Cell Action Facebook group. I’m concerned about the high risk of malnutrition and ultimately the possibility of death.
I really want NICE to accept MCAS (Mast Cell Activation Syndrome) as an illness and provide guidelines. Despite so many pwME/LC developing MCAS, there is virtually no treatment within the NHS. We have to go private to get treatment and support.
I believe MCAS to be the main driver of developing malnutrition, that is, starvation. So many of us, including myself, either have very limited foods which we tolerate or none at all. Often for many, gastroparesis is also involved.
I was admitted to hospital in mid-October for preventative treatment for malnutrition. My GP requested gut rest and alternative feeding via TPN. They refused the feed, but I was admitted. To cut a long story short, their recommended supplements did not work. Then their recommended low histamine, low FODMAP & gluten-free diet actually made me a lot worse, breaking out in hives and my airway being compromised. They wouldn’t liaise with Dr. Weir until after I was discharged and then only to inform him about my admission.
I was discharged in a worse condition than when I went in. The diagnosis was severe constipation, and MCAS was something they knew nothing about. My tryptase test was negative, which is very common.
So, how can we get NICE to accept MCAS because too many patients are in a state of malnutrition? Patients can’t eat because of their symptoms, or like myself, eat small amounts but are in severe pain as a result!
Can you help?
Much love,
Fiona 💙
Thank you for all that you do!
PACE was never about finding if GET helps.
This was purely to get a big fatigue study on the books which purports to be about CFS.
Essentially framing the debate as if CFS were coined for fatigue rather than the immune evidence which was the real reason the CDC created this syndrome.
For so long as people bicker about fatigue, this serves the purposes of those who wish to have you bicker about fatigue to the total exclusion of immune evidence.
Thank you for your important work on this issue. When I underwent "treatment" at the West Yorkshire ME clinic the CBT and Get made me more ill leading me to make an official complaint to the CQC.
Sadly, it appears medical dogma is still rife in this country as some of the Royal colleges opposed the new NICE guideline which dropped these quack therapies.
We have a long way to go but together we can make a difference.
On a slightly different note there is room for optimism if RFK jnr gets appointmented as US health secretary. Maybe the pernicious influence of big pharma will be severely reduced and doctors committed to following scientific evidence will get free rein. The ME community in America should reach out to RFK as the previous administration was not devoting the extra funds necessary into ME research as shown by the NIH road map for ME research adopted last year. I'm a socialist and to be honest don't care that RFK is a trump appointee. People have to put their political views to one side on this issue.
So lucky to have David fighting our corner, very grateful for all that he - and everyone who's supporting him - has done over the years.