Marky90
Science breeds knowledge, opinion breeds ignorance
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- 1,253
"insidious" is the word.. I shall!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Very severe ME
- Thread starter Marky90
- Start date
"insidious" is the word.. I shall!
Research 1st
Severe ME, POTS & MCAS.
- Messages
- 768
You know guys, It saddens me someone could be so ill as Whitney, yet few influential people in medical practice question themselves regarding the ethics and morals of not exposing in public, the rubber stamped medico political neglect the CDC's horrific creation: CFS has caused in regards to severe ME.
I link below to the short video about Whitney which was really moving and very useful to send people (to educate them on about very severe ME). All people hear about in the media, is Chronic Fatigue. Very few people know that a subset of extremely sick patients can look like they are dying, and have large weight loss, and muscle wasting, when the old lie is ''you don't look ill''. There was another very unfortunate young man on video a while ago, Ben Di Pasquale someone. He also was extremely thin and looked dreadfully sick.
So ''but you don't look sick'' may be true in more moderate illness or in severe illness for a few years, but I know of many PWME who do look dreadfully ill, but it takes time to look like this. For example, long term severe ME patients tend to have sunken eyes, panda rings under the eyes, palor (or post exertional palor), dry/oily skin, droopy eyelids, and a 'stoned' look about them as if they look dehydrated/insomniacs/infected. And if they don't, they will visually look worse if you talk to them and you'll see how quickly they neurologically deteriorate, simply from the effort of talking!
One of the first sensible doctors I heard of who noticed this phenomena in patients was Dr Byron Hyde. He explained how patients can enter his office on nervous energy, seemingly talking ten to a dozen but hours later they are zoned out and displaying all the characteristic neurocognitive traits of ME (by using their brains to talk and think). So severe long term PWME can and do look sick. (Displaying the myth ME is always a 'hidden illness').
If we return back to Whitney once more, and the video linked below, I was struck by the plight of his poor elderly besieged parents who reminded me of other parents of severe ME kids I know of who have to sacrifice everything to look after their children with severe ME, be they 12, or 22, or 42. Being forced to live indoor in a bedroom for decades and surviving that long with ME, is an incredible experience, incredibly terrifying.
So...
In my view, we should try not to forget other minority groups excellent social movements to demand they aren't ignored.
Other minorites don't describe themselves with a bigoted, discriminating label that invites more discrimination
For us, it's 'CFS' for others it's the N-Word or homosexual slurs. It always astounds me, some influential people still use the word 'Chronic Fatigue' in reference to those with a clearly devastating, multi systemic disease process when one doesn't have to do this. (Fatigue is normal, and experienced by healthy humans every day). ME isn't, and the diseases inside 'CFS' also.
Whitney and others like him are laying in a half coma of devastating neurological/infectious/autoimmune/inflammation and clearly desperately ill, but as I said, very few influential people stop and ask themselves is it sensible to continue to use a damaging, discriminating, medically false label (Chronic Fatigue) in someone who suffers the same disabilities as someone terminally ill?
As people with very severe ME can die, I would not like to think I was destroyed by a disease (apparently post vaccinations, which if so happened to Sophia Mirza also) or my neighbour, relatives, doctor, or wider society thought I suffering from a syndrome, of 'Chronic Fatigue'.
It's heartbreaking, truly, what the CDC has done to people all over the world (aided by their military partner the UK), and the more ill you get with systematic inflammatory disease , the more dangerous it is, to use the 'F' word (Fatigue), or to tolerate it. I wish I could write to this guy and send him my love, and all the other patients who are so incredibly ill. It's so wrong to see patients like this labelled with 'CFS' and I pray someone will help them in the future and they will survive.
In case people missed it, here's the video again about Whitney with bedridden extreme ME. It sums up the situation of those with life long disease, perfectly, mostly by showing the utter abandonment by the medical profession and parents having to sacrifice their own freedoms to keep their children alive. (Most in society have no idea, parents have to 'retire' at 40/50 and grow old with their kids, trapped inside all day, every day), all together, all living in hell).
This CDC manufactured tragedy of destroying families is not a 'CFS', it's state sponsored neglect, via refusal to fund research and refusal to split Chronic Fatigue (in research) away from a militant psychiatry pincer movement. ME and organic disease 'CFS' could easily be removed from Fukuda CFS and into severe neuroimmune disease categories, which is blatantly what these very very ill patients have. Patients, who are first and foremost, innocent human beings with a right to life.
We've been discussing the PACE trial recently. Read the claims of CBT GET and watch this video, and witness the ongoing scientific fraud (via social psychiatry) the British and their partners are engaged in.
Whitney and Ben (in video above) your parents and all others affected, we salute you.
I link below to the short video about Whitney which was really moving and very useful to send people (to educate them on about very severe ME). All people hear about in the media, is Chronic Fatigue. Very few people know that a subset of extremely sick patients can look like they are dying, and have large weight loss, and muscle wasting, when the old lie is ''you don't look ill''. There was another very unfortunate young man on video a while ago, Ben Di Pasquale someone. He also was extremely thin and looked dreadfully sick.
So ''but you don't look sick'' may be true in more moderate illness or in severe illness for a few years, but I know of many PWME who do look dreadfully ill, but it takes time to look like this. For example, long term severe ME patients tend to have sunken eyes, panda rings under the eyes, palor (or post exertional palor), dry/oily skin, droopy eyelids, and a 'stoned' look about them as if they look dehydrated/insomniacs/infected. And if they don't, they will visually look worse if you talk to them and you'll see how quickly they neurologically deteriorate, simply from the effort of talking!
One of the first sensible doctors I heard of who noticed this phenomena in patients was Dr Byron Hyde. He explained how patients can enter his office on nervous energy, seemingly talking ten to a dozen but hours later they are zoned out and displaying all the characteristic neurocognitive traits of ME (by using their brains to talk and think). So severe long term PWME can and do look sick. (Displaying the myth ME is always a 'hidden illness').
If we return back to Whitney once more, and the video linked below, I was struck by the plight of his poor elderly besieged parents who reminded me of other parents of severe ME kids I know of who have to sacrifice everything to look after their children with severe ME, be they 12, or 22, or 42. Being forced to live indoor in a bedroom for decades and surviving that long with ME, is an incredible experience, incredibly terrifying.
So...
In my view, we should try not to forget other minority groups excellent social movements to demand they aren't ignored.
Other minorites don't describe themselves with a bigoted, discriminating label that invites more discrimination
For us, it's 'CFS' for others it's the N-Word or homosexual slurs. It always astounds me, some influential people still use the word 'Chronic Fatigue' in reference to those with a clearly devastating, multi systemic disease process when one doesn't have to do this. (Fatigue is normal, and experienced by healthy humans every day). ME isn't, and the diseases inside 'CFS' also.
Whitney and others like him are laying in a half coma of devastating neurological/infectious/autoimmune/inflammation and clearly desperately ill, but as I said, very few influential people stop and ask themselves is it sensible to continue to use a damaging, discriminating, medically false label (Chronic Fatigue) in someone who suffers the same disabilities as someone terminally ill?
As people with very severe ME can die, I would not like to think I was destroyed by a disease (apparently post vaccinations, which if so happened to Sophia Mirza also) or my neighbour, relatives, doctor, or wider society thought I suffering from a syndrome, of 'Chronic Fatigue'.
It's heartbreaking, truly, what the CDC has done to people all over the world (aided by their military partner the UK), and the more ill you get with systematic inflammatory disease , the more dangerous it is, to use the 'F' word (Fatigue), or to tolerate it. I wish I could write to this guy and send him my love, and all the other patients who are so incredibly ill. It's so wrong to see patients like this labelled with 'CFS' and I pray someone will help them in the future and they will survive.
In case people missed it, here's the video again about Whitney with bedridden extreme ME. It sums up the situation of those with life long disease, perfectly, mostly by showing the utter abandonment by the medical profession and parents having to sacrifice their own freedoms to keep their children alive. (Most in society have no idea, parents have to 'retire' at 40/50 and grow old with their kids, trapped inside all day, every day), all together, all living in hell).
This CDC manufactured tragedy of destroying families is not a 'CFS', it's state sponsored neglect, via refusal to fund research and refusal to split Chronic Fatigue (in research) away from a militant psychiatry pincer movement. ME and organic disease 'CFS' could easily be removed from Fukuda CFS and into severe neuroimmune disease categories, which is blatantly what these very very ill patients have. Patients, who are first and foremost, innocent human beings with a right to life.
We've been discussing the PACE trial recently. Read the claims of CBT GET and watch this video, and witness the ongoing scientific fraud (via social psychiatry) the British and their partners are engaged in.
Whitney and Ben (in video above) your parents and all others affected, we salute you.
Rlman
Senior Member
- Messages
- 389
- Location
- Toronto, Canada
@Marky90 did you see the testimonials on the Dynamic Neural Retraining Website/Newsletters, they are pretty amazing.
digital dog
Senior Member
- Messages
- 646
I truly believe that some people get well with DNR but I do not think they have ME. If you are well enough to travel across America and take part in Annie Hoopers seminars then you do not have ME.
I found the same with the Lightning Process. Everyone there was functional.
I wouldn't bother looking Marky if I was you. Wait for Rituximab. Why aren't you doing it now? Money?
I found the same with the Lightning Process. Everyone there was functional.
I wouldn't bother looking Marky if I was you. Wait for Rituximab. Why aren't you doing it now? Money?
Marky90
Science breeds knowledge, opinion breeds ignorance
- Messages
- 1,253
digital dog
Senior Member
- Messages
- 646
Shame we can't all work hard and put in overtime to save up quicker!!!
where are you planning on having it Marky?
where are you planning on having it Marky?
Rlman
Senior Member
- Messages
- 389
- Location
- Toronto, Canada
The reason I mentioned DNRS is because @Marky90 wrote "I've been reading some horrible stories of patients who are totally bedbound and also seem to have 50 + symptoms to deal with.. E.G horrible pain, all kinds of sensitivities, allergies you name it." DNRS seems to really help people with sensitivites, allergies, also some people were really weak too. Some were bedridden, unable to be upright at all, due to POTS. They first do the home program before going to the seminar. I think some of them would fit the definition of ME though I may be wrong. Even if not, they are still severely ill. Of course, allergies / sensitivities / bedridden can be caused by things like gut infections/methylation issues as well, so I'm not trying to say DNRS is always the answer for those symptoms.
I totally agree @digital dog that its not for everyone, even I feel too weak to try it and learn it at home. But there are pretty amazing stories. So far I have not seen any research showing lasting success of people who took Rituximab but if others try it, I hope it helps them. I think a lot of people are put off by DNRS bc they think they are saying the illness is in their head. That is not true at all. DNRS is saying the illness is physical, but we will use the power of the mind to change the physical.
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Marky90
Science breeds knowledge, opinion breeds ignorance
- Messages
- 1,253
Look at the studies, approx one third experiences a sustained major response
Digital dog: Im having it in some months probably! I agree, the government should pay for it..
digital dog
Senior Member
- Messages
- 646
I am excited to see what happens to you Marky. I'm sure you'll keep us all informed.
It is true Riman that some people have near miraculous recoveries with DNR. I just wish it was true for the majority of us. I so wonder why some people respond and others do not.
I've paid out thousands for Guptas, LP and Annie Hoopers but they didn't work for me. I think my brain is just too broken
That being said, if someone I loved had mild CFS or allergies, I would suggest trying these if they felt able.
It is true Riman that some people have near miraculous recoveries with DNR. I just wish it was true for the majority of us. I so wonder why some people respond and others do not.
I've paid out thousands for Guptas, LP and Annie Hoopers but they didn't work for me. I think my brain is just too broken
That being said, if someone I loved had mild CFS or allergies, I would suggest trying these if they felt able.
jimells
Senior Member
- Messages
- 2,009
- Location
- northern Maine
I've paid out thousands for Guptas, LP and Annie Hoopers but they didn't work for me. I think my brain is just too broken
Maybe the treatments are broken, not the patients.
worldbackwards
Senior Member
- Messages
- 2,051
I've never understood how something requiring as much cognitive effort as LP and the rest could be at all useful for anyone with ME type cognitive problems. I still struggle now just concentrating on the one thing. If I were simultaneously trying to convince myself that I didn't have any symptoms at the same time I wouldn't be able to do anything at all.