the horrible Oslo Paper.

[Rufous McKinney]

CDC changed its tune

CDC operates in the United States of America.

These people are operating in "other countries". It's shocking to think science operates only in compartmentalized units defined by Geography. The earth is flat, in OSLO.


Once upon a time, scientists could agree on science topics, like Gravity; or that Copernicus was smart.

this is getting weird

yes. Its totally weird

And they have ensured it is published in the paper!

Did you notice they tagged onto the article, the NICE guidelines changing the GET policy? Thats oddly appended to the article.

 

[BrightCandle]

now its plural?

Land grab for Long Covid and other Post viral conditions.

 

[Mary]

now its plural?

Look at the article

 

[Mary]

@Rufous McKinney - Even though the CDC is in the US, countries around the world pay attention to it. Just like countries around the world, including the US, paid attention to the horrible PACE trial and doctors here still base their "treatment" on PACE.

It was a big deal when the CDC changed its guidelines and stopped recommending, GET and CBT for ME/CFS and actually recognizes it as a serious illness. This was not very long ago.

 

[Mike Kan]

Wow - now we no longer even have "chronic fatigue syndrome" as our own, no matter how horrible a name but at least it was ours and was some sort of a starting point - now it's just "chronic fatigue syndromes", lump everything together and fix us all by voodoo. I never thought it would get this bad once more research was forthcoming and the CDC changed its tune, etc. It feels surreal.

I think it would be good to write to the Independent about this. It's just there's so much to say, how do you distill it down into a few sentences?

I am glad to acknowledge from the very beginning that they don't understand it. And I will be alone to deal with this. That probably saved me...

 

[Countrygirl]

The ME Assoc. is going to make a statement about this today.

 

[sunshine44]

Do you guys also think this is getting weird that they are trying so hard to discredit this disease? There's too much misinformation.

Absolutely.

The amount of effort that goes into discrediting it is astounding.

The Dr I saw this week was so angry and agitated just at the first 2 minutes of seeing Lyme disease, cdc positive in my folder. Before I even spoke a word. I literally wasn’t going to mention me cfs chronic Lyme nothing. My lips were sealed. He saw that one test and hospitalizations and went off.

This is obviously much larger that we realize. I believe the cabal trains their medical schools to exactly what they want put out there. To the point that these doctors become emotionally triggered, as many of them are trained, when seeing cases like ours. They don’t want their colleagues knowing they have ‘head cases’ like ours that can’t be fixed with PT and SsRI’s. They don’t want to get in trouble for prescribing non traditional treatments that would actual help us if any of these people had once sense of sanity.

I wish it wasn’t so but it very obviously is. Too many of us are being hurt or worse and there is a systematic effort to not get proper tests or assistance for us. For instance, I’ve been told by multiple nurses and private pay long distance doctors, O2 would greatly assist me, but there is zero effort to even address this. 6 years in now. I’m told laying flat with a 89 O2 is normal and to knock it off and sit up.

It’s so surreal and insane.
Thank you for letting me vent on this thread.
Sorry, it’s just….so overwhelming at times the coordinated effort to mock and silence us.

 

[lyran]

If you really want to know what most doctors think about CFS/ME, POTS, Long COVID and fibromyalgia patients, read this reddit conversation (don't read it, it will ruin your day):

https://www.reddit.com/r/JuniorDoctorsUK/comments/nqzs3s

I also believe this "neuropsychiatric cabal" is trying their best to discredit these diseases. The more biological findings come out, the more they are trying to make everyone believe these diseases are psychosomatic. The question is why?

 

[Andryr]

the more they are trying to make everyone believe these diseases are psychosomatic. The question is why?

Because they will be discredited and laid off when it turns otherwise.
I really hope Nath has found something important. Can't wait to see the NIH study results. If he has not found anything it will be a disaster.

 

[sunshine44]

Honestly, I think the reason why is even deeper as author, Kris newby discusses in the book ‘Bitten’. Think military industrial complex.

I think there are many facets as to the why.

But, it’s pretty obvious and we’ve established there is a hidden campaign to discredit these diseases. That’s for sure.

My nurse friend shared this email with me this morning. She’s an activist for a facet of our community after witnessing so much harm. Here’s what one of the medical professionals said in her group email, “this battle cannot be won on a scientific front. We need to mount a socio political offensive, but we are outnumbered and out gunned. We need help from outside our field.”

 

[Viala]

Honestly, I think the reason why is even deeper as author, Kris newby discusses in the book ‘Bitten’. Think military industrial complex.

I haven't read the book but thank you for mentioning it. I also think the reason can be deeper, they are doing it on purpose as if they were protecting the disease. I doubt it's just about the money and potential profit loss for insurance companies, every country it's almost the same story. They are too reluctant to research it and there's also the fact of outbreaks, hospitals, military, schools, all convinient.

They should be more worried about a disease that can turn any healthy person into severely disabled in just one day, meanwhile they all are 'it's all in your head'. So what is going on here.

 

[Viala]

This is obviously much larger that we realize. I believe the cabal trains their medical schools to exactly what they want put out there. To the point that these doctors become emotionally triggered, as many of them are trained, when seeing cases like ours.

Definitely, I've seen it as well. It is not normal or professional for a doctor to become emotionally triggered and it happens so often. They already have all the authority and respect, there's no reason to get angry. They should calmly explain to their patients what is what, but they react with anger instead, as if someone weaponized them to react this way.

I also agree with what you wrote that this can't be won on a scientific front, they'll just disagree and say whatever they want, it seems that it doesn't matter if it is backed up by science or not. They can make it up, use any convincing cocktail of words and media will present it as the truth.

It’s so surreal and insane.
Thank you for letting me vent on this thread.
Sorry, it’s just….so overwhelming at times the coordinated effort to mock and silence us.

I think a lot of us feel this way, it is insane what they're doing.

 

[Rufous McKinney]

Because they will be discredited and laid off when it turns otherwise.

the UK cabal haven't slowed down a bit, since NICE clarified GET and CBT are not valid treatments. It seems all of them are still getting paid.

 

[sunshine44]

I haven't read the book but thank you for mentioning it. I also think the reason can be deeper, they are doing it on purpose as if they were protecting the disease. I doubt it's just about the money and potential profit loss for insurance companies, every country it's almost the same story. They are too reluctant to research it and there's also the fact of outbreaks, hospitals, military, schools, all convinient.

They should be more worried about a disease that can turn any healthy person into severely disabled in just one day, meanwhile they all are 'it's all in your head'. So what is going on here.

Exactly. For years, I gave everyone the benefit of the doubt. Humanity is good at its core. Our baseline is good. Although I still believe that, some of us have had enough experience on multiple levels to know that, at this point, whatever is happening, and on multiple fronts to humanity…. Is larger than money. And this board has made me realize over past 5 years, that (pertaining to this illness) it’s in every corner of the world. So, this makes one have to zoom out and realize, if nearly every single country is having this response, that’s rather unusual …. What is really occurring?

I obviously have my ideas after years of this and I’m sure some of you do too but I will leave it at that for now.

There is a liberation that comes with stepping off the hamster wheel. Wondering why humanity isn’t moving forward. Not that we’ve figured out fully how to break free yet, but just the act of observing and acknowledging is consciousness shifting alone. 🙏

 

[SWAlexander]

There is a liberation that comes with stepping off the hamster wheel. Wondering why humanity isn’t moving forward. Not that we’ve figured out fully how to break free yet, but just the act of observing and acknowledging is consciousness shifting alone.

As soon as you find out, you become conscious and you may become a hermit instead of a voice for a collective need. Sometimes I wonder if this is not the best for me, since my energy to fight is failing.

 

[sunshine44]

As soon as you find out, you become conscious and you may become a hermit instead of a voice for a collective need. Sometimes I wonder if this is not the best for me, since my energy to fight is failing.

Absolutely concur.
I bounce back and forth too.
Some days I’m like, what an absolute surreal joke it all is to be struggling with this invisible illness in this messed up world.
What a journey 😞

I have to watch what info I digest around it all. Sometimes I can. Sometimes I can’t. Heavy, heavy stuff. Listening to my body and mind is important.

But at the end of the day, even being a hermit alone in my room for 5 years, my consciousness I do have control over is like an antennae even when I’m not out there with the majority of humanity right now. Even when I can’t contribute in ways I want to to better humanity. And it’s ok sometimes I can tune in and sometimes I cannot.

 

[SWAlexander]

I bounce back and forth too.

I´m very glad you can manage to keep coming back.

I have been fighting muscular weakness since I was 7 y. old and now I am 74 y.o.
Sometimes even typing becomes a task. But this is not my today's problem alone.

Being in battle with people who expose self-serving ideas using a fraction of (and sometimes false) publication just for recognition, while mocking and harming others, is draining me totally. Instead of saying I don´t have this problem or I don´t have an answer, they keep promoting opinions.

In my local circle, seniors beg friends for money to pay for "special herbal meds", or gadgets they ordered and can´t pay for them. Others seek help in special clinics pressuring their children to help them out.

After Covid my left eye became damaged, Optic Neuritis (all colors appear washed out or dull). I made the mistake and mentioning this to one person. Suddenly an ophthalmologist I didn´t even know would like to sell me left-side self-tanning glasses for 1500 Euro. The problem with this is he never heard of Optic Neuritis

 

[sunshine44]

You are heard.

It’s honestly terrible.

I am severely affected by me/cfs/Lyme and insurance won’t cover home health care or much of anything really. So, I’ve had to fundraise for myself. My family won’t even help because they don’t seem to believe much in my illness after what doctors have told them (it doesn’t exist mainly). So, I just raised money this year for my first ever reclining wheelchair and ramp. Very cheap ones. Like a $350 wheelchair but with assistance from others, I was just able to get outside for the first time on my own (only under 5 minutes and then a few weeks later, 4 people transported me to a local doctors office) with no ambulance assistance since 2019. I’ve only been to and from my house by ambulance since 2019. I worked hard to get strong enough for this. But, it’s so much for my brain to understand why, half alive, I had to put this all together on my own? Sigh.

Keep in mind my helpers are mostly volunteers that read my story in a newspaper article! What a despicable system we live in. Truly.

It’s not right. I’m sorry for your suffering and that we even have to beg for funds for medical necessities is beyond me. How humanity came to a point it cannot properly take care of its children, elderly and disabled is appalling.

Yeah, the medical field. Sigh. And then if you don’t try some of their harmful or very expensive suggestions after years of so much harm from them, you are considered non compliant etc. because truly most of these ‘specialists’ know very little about my illness I have found and so many have apparently found too.

In solidarity.

 

[ruben]

To be honest, I don't even bother to delve in and read the stuff on these kind of topics.

now its plural?

 

[SWAlexander]

You are heard.

And I hear you too.
My aim is to continue fighting as much as possible.
I will never allow people to be cruel.
Keep going sunshine 44 and don´t allow others to tell you how to feel.