All hope is lost

[Quilp]

At least it is for me. This study, eight years in the making kept me going. I wish they hadn't published this junk, at least then my hope might have held on a little longer.
There is so much I want to say about Abi Nath and Wallit but if I did I would be banned from social media. Suffice to say I have been critical of Wallit from the get go.
Ok, so I was going going to pull apart this piece of crap, but I am so upset, I can barely bring myself to speak to anyone, So I will focus on just one piece of data - 4/17 patients spontaneously fully recovered. I have never heard of anyone spontaneously recovering; perhaps it does, and I am willing to except that it does in very rare circumstances. This isn't one of those rare circumstances. This is a glaringly obvious inability to screen patients for ME -irrespective of what they say they did.
To put that in context we have 250,000 patients here in the UK. Is anyone going to convince me that 60000 patients spontaneously recover every few years ? Utter nonsense and honestly I really want to say more but i dare say that would land me in more trouble than I already am.
This wasn't a study about ME and it will be seen in a similar vain to the PACE trial, in years to come. Shocking waste of money, and a trial lasting EIGHT years ! Imagine that.
I have said goodbye to hope, This was the last chance saloon for me. There is never going to be an effective treatment for this illness in the decades to come.

 

[sunshine44]

At least it is for me. This study, eight years in the making kept me going. I wish they hadn't published this junk, at least then my hope might have held on a little longer.
There is so much I want to say about Abi Nath and Wallit but if I did I would be banned from social media. Suffice to say I have been critical of Wallit from the get go.
Ok, so I was going going to pull apart this piece of crap, but I am so upset, I can barely bring myself to speak to anyone, So I will focus on just one piece of data - 4/17 patients spontaneously fully recovered. I have never heard of anyone spontaneously recovering; perhaps it does, and I am willing to except that it does in very rare circumstances. This isn't one of those rare circumstances. This is a glaringly obvious inability to screen patients for ME -irrespective of what they say they did.
To put that in context we have 250,000 patients here in the UK. Is anyone going to convince me that 60000 patients spontaneously recover every few years ? Utter nonsense and honestly I really want to say more but i dare say that would land me in more trouble than I already am.
This wasn't a study about ME and it will be seen in a similar vain to the PACE trial, in years to come. Shocking waste of money, and a trial lasting EIGHT years ! Imagine that.
I have said goodbye to hope, This was the last chance saloon for me. There is never going to be an effective treatment for this illness in the decades to come.

Your feelings are so valid.
We have been so unbelievably abused (our community).

But I ask you to not put all of your eggs in this basket…. And remember there are so many roads.

I think so, so, so many of us are disillusioned with these studies at this point and what these scientists and researchers are even spending this money.

I imagine a shell that is cracking …and we, the patients, are inside the shell. What comes next, shall be interesting.

Sending you light in your rock bottom today. Your feelings are entirely understandable. They should be doing better and thus far, absolutely have not.

 

[Wishful]

All hope is not lost. Did you really believe that an NIH study was the one true path to solving ME? The NIH hasn't shown any real resolve to solve ME, so the studies they do fund are mainly for NIH political purposes. Sadly, there's a lot of ME research meant for personal or political purposes, but there are some people who actually do want to solve ME, so there's hope there.

I didn't even pay attention to this NIH study when it was underway, since I didn't expect anything useful from it.

 

[Marylib]

I understand your feelings and just want to say - to hell with NIH. To hell with letting them encourage you to lose hope. If you can, try not to give them space in your head, in your thoughts. They don't deserve to have a place there.

 

[Hip]

All hope is lost

I would not say so: the study found T-cell exhaustion in ME/CFS, and this might explain why ME/CFS patients cannot clear their viral infections.

UCSF are planning an ME/CFS clinical trial using a drug which may reverse the exhaustion, and thereby clear viral infections. More info in this thread.

 

[BrightCandle]

The study patient selection was garbage tier, a complete mess and it calls into question the study, all the other studies that are due done on these patients and unfortunately the WASF3 finding that used the muscle tissue for its investigation. The study has already been ripped to pieces and into the meme territory already.

Research has never been better in this field than it is right now however. While the NIH was trying to put its baby pants on and crawl Long Covid has caused an enormous injection of scientific interest across the globe and we have trials finally, more than I can count. But all it really shows is the NIH remains completely irrelevant to the research in ME and Long Covid. They never got started, they still have awful bigotry incorrect views on the disease and that is unlikely to change. They however irrelevant because they haven't funded anything of worth for decades anyway.

 

[Quilp]

Thank you. I am truly sorry that I came across so negatively. I guess I was hitting out in all directions.
I have suffered for over ten thousand days.

I genuinely believe that if this illness had been taken seriously many decades ago, no-one would be suffering right now.

There are reasons to be positive, you are absolutely right Hip, and thank you for elaborating on so many of the positive drug trials that are happening.

 

[Marylib]

Hope you won't be too concerned about coming across negative @Quilp . Sometimes all we can do is lash out in whatever way we feel at the moment. I am glad you felt comfortable enough here to express yourself.

 

[Wishful]

They however irrelevant because they haven't funded anything of worth for decades anyway.

That's interesting. Are any individuals or groups tracking "value for money" for government departments, research organizations, etc? I could see journalists jumping on stories about "NIH scorecard: $x00 million spent over y years: 0 successes". That's the sort of embarrassment that can get deadwood shuffled out of positions, and maybe get someone more competent in.

I'm sure people would like to know what qualifications the people who predetermined the outcome of the study (by putting a psychologist in charge) had.

 

[Rufous McKinney]

4/17 patients spontaneously fully recovered.

I got tripped up by this term spontaneously. The more I think about it, the more unlikely it seems.

Some folks have hypothesized we have a problem with the recovery phase. Bodies should recover but aren't.

so four individuals being intensely studied, you'd think you'd be able to notice something shifting related to recovery.

but spontaneous?

 

[Marylib]

I guess, @Rufous McKinney - spontaneous recovery means recovery without any treatment. And I guess no one noticed anything because those individuals were already done with their participation in the study and no one cared to look back at the data to speculate as to why they recovered when others did not? And I guess the recovery was self-reported?

 

[hapl808]

Thank you. I am truly sorry that I came across so negatively. I guess I was hitting out in all directions.
I have suffered for over ten thousand days.

I genuinely believe that if this illness had been taken seriously many decades ago, no-one would be suffering right now.

Many of us feel that way sometimes. After being sick for 25 years and watching my life fade away, I'm plenty negative.

With close to zero interest in ME/CFS over the years, I felt there was no hope of serious treatments - just our own attempts to get lucky and stumble on something helpful. Long Covid is ridiculously underfunded - the $1.1b over the first four years compared to $12b for HIV during that same period - but compared to $0.06b for ME/CFS over that period it's light years better.

I'm still pretty negative because they already squandered most of the Long Covid money, but I'm slightly hopeful that there will be more funds allocated.

I got tripped up by this term spontaneously. The more I think about it, the more unlikely it seems.

Some folks have hypothesized we have a problem with the recovery phase. Bodies should recover but aren't.

so four individuals being intensely studied, you'd think you'd be able to notice something shifting related to recovery.

but spontaneous?

I haven't read the paper, but did they actually recover? Were any objective markers improved, or did they just claim recovery so they could stop participating in the trial?

And if there was a real recovery - did it last? Many have had temporary remissions. Far fewer have actual recovery without any further relapse.

 

[andyguitar]

I haven't read the paper, but did they actually recover? Were any objective markers improved, or did they just claim recovery so they could stop participating in the trial?

And if there was a real recovery - did it last?

I have read the paper and have not seen anything that answers your questions @hapl808 but I will have another look. Determining what changed after their recovery could provide some answers. Of course it's possible they had been misdiagnosed.

 

[Rufous McKinney]

I haven't read the paper, but did they actually recover?

I opened the paper. I guess many researchers got paid out of the stash of funding.

My eyes glanced upon it, and scrolled down.

Oh dear.

I read a bit on who/how they selected.

two paragraphs, then I lose my shit and go to the conclusions.

Then I used the FIND button and Effort is there 52 times I think. I got totally worn out, trying to figure out what is the REWARD part of this Effort avoiding?

 

[Rufous McKinney]

recovery

how about this:

its IMPOSSIBLE to "spontaneously fully recover" from an illness you cannot yet define.

 

[hapl808]

how about this:

its IMPOSSIBLE to "spontaneously fully recover" from an illness you cannot yet define.

This is my problem. If you can't define the illness, it's harder to conclusively declare recovery. At best, you can say that symptoms are no longer subjectively apparent.

The whole thing just seems logically impaired. If you're saying people recovered - say what that means. Otherwise, we know that all doctors assume when their patients stop coming, the doctor's brilliance must've cured them.

 

[Rufous McKinney]

the doctor's brilliance must've cured them.

the term spontaneous and "fully"......

?????????

that suggests nobody did anything, as its spontaneous.

Dr. Walitt could have made a case that the four patients discovered they were humans, accepted the fact that while in bodies, bodies hurt and don't work' therefore they were actually normal, abled and FINE.

 

[sunshine44]

the term spontaneous and "fully"......

?????????

that suggests nobody did anything, as its spontaneous.

Dr. Walitt could have made a case that the four patients discovered they were humans, accepted the fact that while in bodies, bodies hurt and don't work' therefore they were actually normal, abled and FINE.

🤣🤣🤣

 

[Wishful]

Dr. Walitt could have made a case that the four patients discovered they were humans, accepted the fact that while in bodies, bodies hurt and don't work' therefore they were actually normal, abled and FINE.

Psychologists seem to be adept at changing definitions to fit their theories. I imagine them declaring success in healing broken legs by changing the definition of "broken".

Were any objective markers improved, or did they just claim recovery so they could stop participating in the trial?

That was my thought too. "I'm done with this stupid torture. I'll say that I fully recovered, just let me out now." Also, maybe subjects were encouraged in some way to claim remission. Do you think psychologists would play mind games with subjects?

 

[Judee]

I don't know what study you are talking about--does anyone have a link?

Sorry about that. It's the one mentioned in this thread:

https://forums.phoenixrising.me/thr...phalomyelitis-chronic-fatigue-syndrome.91602/