There will never be a cure for CFS...

[Wishful]

Umm, methyl prednolone is an immunosuppressant, which supports the theory that the immune system in involved in ME/CFS. It does have some psychoactive properties, but those seem vague and unreliable, so hardly something to base a theory on.

Also, treating symptoms doesn't necessarily indicate much about the cause of the disease. You might be masking your symptoms with those drugs, but not treating the underlying cause. Opium might make a wound not hurt, but it doesn't make the injury go away.

 

[Stretched]

Umm, methyl prednolone is an immunosuppressant, which supports the theory that the immune system in involved in ME/CFS. It does have some psychoactive properties, but those seem vague and unreliable, so hardly something to base a theory on.

Also, treating symptoms doesn't necessarily indicate much about the cause of the disease. You might be masking your symptoms with those drugs, but not treating the underlying cause. Opium might make a wound not hurt, but it doesn't make the injury go away.

I’m sorry you apparently don’t understand the concept presented. Try synthesizing. Don’t feel regret for me but do feel free to criticize those theories with which you may have experience even if they’re not related to the hypothesis at hand.

 

[sorin]

IMO, We are getting very close actually.

Wow! Why do you think so?

 

[sorin]

I've come to the realisation that there will never be a cure for CFS. I think it's mostly due to the fact that we don't even know exactly what we have. Despite the ongoing research, I somehow doubt that we all share the underlying biomarker. If they do discover a biomarker, it will be called a new disease, and just exclude a portion of sufferers from having the label CFS. I think that CFS will always continue to exist because there will always be patients who continue to experience symptoms and medical science will never be able to find all the causes.

Sorry for being pessimistic, I felt really good today and went out for breakfast. Now I am paying for it hard...

But what if a new retrovirus is discovered? The one responsible for our disease.

 

[Frenchguy]

If metabolics is the root cause of ME/CFS, and given the fact there doesn't seem to be irreversible damage, I think the disease is curable.

The fact that metabolics may be the heart of the disease bring me hope because many treatments for metabolic disease are cheap compared to specific immune modulating drugs.

I also think that treatments for our possible metabolic target may already exist and are low risk compared to immunosuppressive drugs, which is good for trials purpose.

The cost is definitely an important factor to treat a disease. Many disease would be better managed if the right drug was used. But it's political problem about money.

If the treatment is cheap et effective, I don't see why governments wouldn't like to treat people to return at work.

When i see the advance of OMF, I now understand why BIG pharma isn't interested by our disease. These are bankers and they seem to know that CFS is not primary immune.
As an industrial engineer, I know that pharma industry don't won't to cure people, but want loyal customers.
If one doctor disagree with that, I hope he will never have a chronic pathology that requires long-term treatment.

I am happy that autologous stem cells transplant is becoming an increasingly accessible treatment for MS, big pharma i do not think so.

My only hope is that the NIH fund the projects of Ron Davis, and that the serious research done in Norway advances.

In France we leave too far to hope for something in the short term.

The dream is that our future treatment will be accessible off label.

My son will be 3 years old on August 10th and I have been sick since these 4 months, I do not see him growing up.
The disease is horrible, but the privations it engenders are so much.

 

[msf]

Sometimes intuition is wrong. ME will be solved within 5 years, as Lipkin predicted, and cfs will be redefined as several types of autoimmune disease that present with similar symptoms. The reason I'm confident is that even a non-scientist like me can come up with plausible models of ME from the recent findings.

 

[ljimbo423]

Sometimes intuition is wrong. ME will be solved within 5 years, as Lipkin predicted, and cfs will be redefined as several types of autoimmune disease that present with similar symptoms. The reason I'm confident is that even a non-scientist like me can come up with plausible models of ME from the recent findings.

Researchers like Chris Armstrong have already put together a theory. One that I feel is very likely right. The challenge is proving his theory on a biochemical level in ME/CFS patients.

I'm quite sure that will happen and I do think researchers are getting closer and closer to the answers.

We also now have five research centers all working together to find these answers! The newest addition is Harvard!!

Jim

 

[HowToEscape?]

There is no reason to think that it is fundamentally incurable. Provided some Oregon is not permanently damaged, then the disease is reversible or mostly reversible.

HIV appeared to be both untreatable and incurable. It is now treatable to such an extent that people with HIV can live nearly their normal life span, And a cure is thought to be at least possible.

That was accomplished by assigning massive numbers of highly talented people to the problem, which happened because a large number of very noisy and highly influential people were able to demand those resources. It was also because it’s an infectious disease, and people figured that either they or their kids might get possibly catch it.
Whatever is wrong with us is a difficult problem, but probably not as difficult as AIDS. Unfortunately, we’re just a bunch of regular folks, not the media, entertainment and economic elite. The official response to us has been a bit different.

 

[Pink]

@ljimbo423 can you tell us more or link to Chris Armstrong's theory?

 

[ljimbo423]

@ljimbo423 can you tell us more or link to Chris Armstrong's theory?

Hi Pink- Chris Armstrong's theory of the cause of CFS is dysbiosis and increased intestinal permeability (leaky gut).

I have experienced incredible improvements in my health in the last year treating dysbiosis and increased intestinal permeability (leaky gut).

Here is a quote from a post he made here at Phoenix Rising-

Well we all experience a bacteremia when we exercise. The type of bacteria that enter your bloodstream are usually quite controllable by your immune system but if your gut is further compromised they may release more bacteria into your blood or more pathogenic species or your immune system may already be depleted. This is the concept for the chronic sepsis or SIRS and this is what I think may be behind PEM.

LINK to post

Here is a video where he explains his theory in a little more detail at 48:45 minutes in, he says this-

"When you've got bacteria promoting inflammation in the blood or in the body for a long period of time , it exhausts the bodies resources by fueling this chronic immune activation and in turn eventually

you get this fatigue or starvation phenotype that's occurring". "Bacterial translocation is normal, it does happen to everyone, but its the type of bacteria that you are bringing and the level or the number of them that might be posing a threat".

Jim

 

[mariovitali]

Wow! Why do you think so?

Because we have a lot of Researchers looking at ME/CFS at the moment. There is also sharing of results and better handling / analysis of the Data being generated. Finding different bits and pieces of this disease will help scientists to put these pieces together to understand the underlying cause.

The only thing that worries me is that behind the delay of finding a treatment/cure for ME/CFS may be a fundamentaly wrong assumption about a -potentially- fundamental aspect of this disease.

If i am right, this will be a huge blow to the Medical community. I really hope i am wrong.

 

[EtherSpin]

I've come to the realisation that there will never be a cure for CFS. I think it's mostly due to the fact that we don't even know exactly what we have. Despite the ongoing research, I somehow doubt that we all share the underlying biomarker. If they do discover a biomarker, it will be called a new disease, and just exclude a portion of sufferers from having the label CFS..

I think that the persistence of the illness ( low incidence of spontaneous recovery or even recovery with every treatment under the sun) and the unique combination of PEM, brain fog, light and sound sensitivity and reasonably frequently some form of orthostatic intolerance indicates a *mode* the body is stuck in - I know this is an old idea, Im just saying why I think thats correct.

as a result of this notion I think we will indeed find out what the mode is intended for long term, what its protecting us against so we can treat that underlying factor that renews this suppressive state of being OR we will find its an erroneous loop and be able to trigger an escape from it even if we need periodic treatments to make this happen over and over.

I don't think discovery of a subset thats treatable would leave folks behind, it would be further evidence that 50% of the worlds medical community was talking total crap about CFS from the 80s till now and as a result it would be seen as shameful to be dismissive of people exhibiting similar symptoms but coming up negative on the new test that would involve

 

[kitaara]

I've come to the realisation that there will never be a cure for CFS. I think it's mostly due to the fact that we don't even know exactly what we have. Despite the ongoing research, I somehow doubt that we all share the underlying biomarker. If they do discover a biomarker, it will be called a new disease, and just exclude a portion of sufferers from having the label CFS. I think that CFS will always continue to exist because there will always be patients who continue to experience symptoms and medical science will never be able to find all the causes.

Sorry for being pessimistic, I felt really good today and went out for breakfast. Now I am paying for it hard...

15 or more years ago CFS was relatively unknown.

I remember a time when people who had CFS were described as either:
1) Lazy
2) Depressed

There was nothing else. You were either this, or that. No matter how hard you explained and showed Doctors how badly you suffered. You were either put into the first category or the second. I know because I have been struggling since I was 16 and no one ever believed I could have any condition or disease.

Today, you hear about CFS all the time. You switch on the tv, and there's a talk show on CFS. You open a magazine, and there's an article about CFS. Heck, last time there was a debate on TV on whether CBD oil should be given to CFS/ME patient as an alternative treatment!

This stuff was unheard of 15 or more years ago! Stuff is happening. Research is being made. You know how common CFS is? It's becoming increasingly common in this day and age. (Something is happening to the human race, but that is another story...)

I went to a Food Intolerance doctor last time, and when I told him what I suffered from he told me:

"Oh dear, I have been having so many people coming to me with the same condition. It seems CFS cases are increasing every year. I don't know why this is happening. It worries me."

And remember, when a lot of people suffer from the same thing -> RESEARCH IS MADE. We should really worry and be sorry for people who suffer super rare diseases because research on their own problem will be so difficult It breaks my heart thinking about it....

 

[SK2018]

Curing cancer would be bad business for pharma

I think there is a lot of validity to the idea that we wont have a cure anytime soon. Here are the reasons why i think that:

1- Medicine has made much progress, but the amount we dont know, compared to what we know, is enormous!

2- CFS is multiple diseases. So the only thing we all have in common is a group of "symptoms", i dont think you can search for the cure based on symptoms. It's like saying you found a cure for stomach pain! A stomach pain could be due to a bad lunch, or cancer, or ...

3- So far there is zero progress. All the nice papers that are coming out only show some correlation, not causation. The correlations are also pretty weak. On top of it all, the sample sizes are tiny!

4- Also, research is conducted when medicine acknowledges that there is a lack of treatment and understanding with respect to an illness. However, most doctors are fairly certain they understand CFS. Almost all the doctors i have met have been pretty sure my problems are in my head or due to stress. My best friend that i grew up with is a family physician and he still insists that i need to just take SSRIs and exercise (he subscribes to this GET bs).

5- And the worst problem? resources! There are so many cancer research centers around the world and the best minds are working on this disease and still there is only incremental improvements. Compared to cancer there are literally no resources being spent on ME/CFS. I was looking at Dr Davis's lab, there are just a handful of postdocs! one per area of research! they have *one* bioinformatics person crunching the numbers on their tiny dataset of 20 people. Anyone who has worked in statistics will tell you 20 is pretty useless. There are individual cancer research centers (of which there are MANY) that have multiple times the size of resources and funding as Dr Davis' lab. Unfortunately ME/CFS "disappears" people, so its hard to gain some traction in terms of raising funding and awareness when we are all bedridden and as a result at the bottom of the socioeconomic ladder.

Also, there are generally two milestones in terms of developing treatment for any illness. First one is when a theory of the underlying pathology is established (basically how the disease works). The second is when they work on finding treatment. And usually there is a fair bit of time that has to pass from the first milestone to the second. And right now we have NO working theory. I know Ron Davis has done great work but really, we need MUCH more research.


Anyways, i am also going through a crash! I really hope my pessimism is CFS induced rather than grounded in reality.[/QUOTE

 

[EtherSpin]

Curing cancer would be bad business for pharma

not for the folks who managed it and the first few to get a clone treatment going that circumvents patents.
is AIDs treatment vaguely affordable ? if so I think that should be an indicator

 

[Murph]

not for the folks who managed it and the first few to get a clone treatment going that circumvents patents.
is AIDs treatment vaguely affordable ? if so I think that should be an indicator

Curing anything would be bad for pharma, but really good news for the governments who pay for a big chunk of healthcare costs in civilised countries. . Governments fund most research too, so I wouldn't imagine pharma incentives are the last and final word on things.

 

[Belbyr]

Take a look at dysautonomia research. They are ahead of us, but come to find out... they are us. Back around 2012, there was practically nothing. Just a few doctors here and there that were trying to treat it but really had no clue. They could see issues on tilt tables but nothing in the blood.

Fast forward a couple years, now they have found that it is an autoimmune disease. Antibodies attacking the different sympathetic and parasympathetic nervous systems. These findings have also been found in CFS. There was a reason Cort Johnson was at their seminar in Nashville a couple weeks ago.

Dr Kem at Oklahoma was able to give lab rats and rabbits the illness, and just recently he used a 'decoy protein' that has already been patented to significantly improve(it might have reversed) the condition. All that happened in less than 2 years(discovery to potential cure). The thought is these decoys could be used like immunologist use shots for allergies. Let the immune system get used to them, leading to no more self harm.

I think CFS researchers are looking more upstream, from what I understand genetics in mitochondria can be what starts autoimmunity. We already know we have autoimmunity issues.

As a side note, I have people that work for me that have Lupus, Fibro, and MS. They hardly ever miss work. They still have good and bad days, but they actually have moderate therapies to help them now.

Some of the doctors at OMF think they are on something, but they don't want us trying to acquire it because safety hasn't been tested.