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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Has anyone been completely cured of CFS?

Mij

Messages
2,353
, wordsmithing me is simply not a credible response - one "experiences" cancer, flu and ME - the phraseology does not and more importantly is not meant to trivialise any of these illnesses. The fact that you react so badly to mere semantics is very telling

I'm rereading your posts and it seems to me that you use a language similar to these types of psychological therapies. Kind of like blame the sick person if they don't believe or get well after therapy. Very defensive imo
 
Messages
15,786
one "experiences" cancer, flu and ME - the phraseology does not and more importantly is not meant to trivialise any of these illnesses.
And if you went to a cancer forum, and peddled LP as the "cure" for it, you'd get a lot of extremely offended responses. We're offended for the same reason. We have a chronic (biologic) neurological disease which involves various objectively documented biological abnormalities which cannot result from thought processes or inactivity.

Please try to imagine how hurtful it would be for a cancer patient to be told that they can be cured if they want to badly enough, with a three-day course. And with the message that if they fail to be cured, it's because they weren't trying hard enough. You and LP are making us feel that way, and you don't seem to care.

We have infections verified by blood tests. We have chronic inflammation verified by blood tests. We have a unique biological disability verified by a two-day CPET. Unless you can objectively verify that you had these problems before LP, and lack them after LP, we are really not going to be interested. Your subjective self-report of your illness and the "cure" are one small step above "completely useless" as persuasive evidence.

We're happy to respect that you feel better after LP. But we're not willing to close our eyes to the scientific evidence, our objective lab results, or our own subjective experiences, and blindly believe that changing our thinking will cure our disease.
 

Gingergrrl

Senior Member
Messages
16,171
Sorry for a stupid question, but what is LP? I have never heard of it and tried to go back and read the thread to find the meaning of the term but am missing it.
 

redviper

Senior Member
Messages
145
I would say the above response from Valentijn was very articulate and politely summarized the opinions of most here.

Be cautious though Dster, you are walking a fine line and unnecessarily provoking some very sick people. We are glad that an enhanced form of CBT helped you with your condition, but for most of us, behaviour therapy and a placebo effect is not the answer to our devastating chronic illness.
 

Legendrew

Senior Member
Messages
541
Location
UK
I think that sometimes the illness just runs its course and burns itself out.

I don't believe there is any effective treatment that exists for ME/CFS today and the fact that ME/CFS is likely made up of multiple different conditions means that anything one person finds that helps is unlikely to help everyone.

Things such as GET/CBT may help those who have already begun to substantially improve but I don't think there is good enough evidence to support any treatments whatsoever as of yet.

Time is the best chance of improvement in my opinion and it seems to be the case that while few recover to 100% of their former selves, many ME/CFS patients do improve over time to varying degrees of health and a modest chunk do return to a somewhat normal life.
 

SOC

Senior Member
Messages
7,849
Time is the best chance of improvement in my opinion and it seems to be the case that while few recover to 100% of their former selves, many ME/CFS patients do improve over time to varying degrees of health and a modest chunk do return to a somewhat normal life.
Neither my daughter nor I improved over time. In fact, we continued to get worse over time. It was antivirals and treatment for dysautonomia that gave us significant improvements.

That said, we clearly have ICC ME, not Oxford, CDC Empirical, or Fukuda CFS -- meaning we have, among other things, clear PEM/PENE, not "fatigue" or exercise intolerance. We have documented immune dysfunction, multiple active intracellular infections, and abnormal CPET tests. For our ME/CFS subset at least, I don't believe research supports, or common sense suggests, that time alone would resolve those abnormalities.
 

Legendrew

Senior Member
Messages
541
Location
UK
Neither my daughter nor I improved over time. In fact, we continued to get worse over time. It was antivirals and treatment for dysautonomia that gave us significant improvements.

That said, we clearly have ICC ME, not Oxford, CDC Empirical, or Fukuda CFS -- meaning we have, among other things, clear PEM/PENE, not "fatigue" or exercise intolerance. We have documented immune dysfunction, multiple active intracellular infections, and abnormal CPET tests. For our ME/CFS subset at least, I don't believe research supports, or common sense suggests, that time alone would resolve those abnormalities.

The trouble here is that we are looking at an individual couple of cases whereas I was discussing the disease on a population level. It would be foolish to say that diseases cannot get better by themselves; many autoimmune conditions can indeed burn themselves out even ones where there is clear pathological damage occurring such as lupus and there are even reports of some cancers simply getting better by themselves (not I'm not advocating these diseases remain untreated, my point is that the body's ability to repair itself often goes unrecognised!).

What many don't realise is that the vast majority of medical treatments given today simply help the body to correct the problems itself; whether that is weakening a pathogen allowing the immune system to destroy the agent or otherwise - to say that time doesn't help in chronic diseases is painting the wrong picture entirely.

As far as disease definitions, I'd rather not get into that as I personally feel they are all simply placeholders until we find actual ways to test for the disease; personally I think any definition not based on lab findings is already on somewhat shaky ground. I also think that both ME and CFS are terrible names and hope that the disease gets a befitting name once the underlying pathology is discovered, it's beyond me why people clamor over ME rather than CFS when they're both as useless as one another in terms of describing the disease.

It's interesting to hear that you found you got an improvement from antivirals and other treatments but I'd be very wary of recommending these types of treatments in the absence of trials weighing up the risks and gains with good results and I think we all know that such a trial has yet to be published and replicated.
 
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SOC

Senior Member
Messages
7,849
The trouble here is that we are looking at an individual couple of cases whereas I was discussing the disease on a population level.
Certainly, we don't have much research on any ME treatments, so everything has a large degree of speculation and anecdote at this point. At the same time, I have seen no evidence (other than that of the BPS school) that this disease, on the population level, burns itself out over time. In fact, there are many patients known to have ME for decades, which would be unlikely if time alone healed ME.

It would be foolish to say that diseases cannot get better by themselves; many autoimmune conditions can indeed burn themselves out even ones where there is clear pathological damage occurring such as lupus and there are even reports of some cancers simply getting better by themselves (not I'm not advocating these diseases remain untreated, my point is that the body's ability to repair itself often goes unrecognised!).

Agreed, there are reports of all kinds of illnesses going into spontaneous remission. They are rare and inexplicable. Even though spontaneous remissions are known to occur, no respectable physician recommends that a patient just wait a few years without treatment on the off-chance that they'll get one of the rare spontaneous remissions.

What many don't realise is that the vast majority of medical treatments given today simply help the body to correct the problems itself; whether that is weakening a pathogen allowing the immune system to destroy the agent or otherwise - to say that time doesn't help in chronic diseases is painting the wrong picture entirely.

Yes, many medical treatments are designed to help the body recover, but still require something from the body's own resources to affect a complete cure. Antivirals are an excellent example. They stop the virus from replicating, but they don't kill off infected cells. The body's immune system still needs to do that part. Does that mean the antivirals are unnecessary? Of course not. When the body cannot handle the infection alone, as is the case with chronic infections, the antiviral provides the necessary support of preventing further infection while the immune system is trying to catch up. Without the antiviral, the infection overwhelms the immune system's ability to control the virus. This is particularly important with immune impairment, which is known to exist in ME. If the immune system is already struggling to contain and fight the infection, it's foolish to argue that because it still has some capability to fight we should not provide the assistance it needs to succeed.

As far as disease definitions, I'd rather not get into that as I personally feel they are all simply placeholders until we find actual ways to test for the disease; personally I think any definition not based on lab findings is already on somewhat shaky ground.
I agree our definitions are placeholders at the moment. My point was that my experience is likely to be relevant only to the subgroup that is similar to mine, and may very well not apply to patients in a different subgroup.

The reality of my illness (and my daughter's) IS based on lab findings. We have multiple immune dysfunctions. We have multiple chronic and/or reactivating infections. We have abnormal CPET test results. We have measurable OI. You don't have to call it ME or CFS or ME/CFS if you don't want to. They are still lab findings that are consistent with the ICC and the belief of top ME/CFS experts as to what constitutes ME.

Yes, we need a cleaner definition. At this point in time it's probably more politics than lack of lab findings that prevents us from having that definition. That doesn't mean that ME doesn't exist or that our experts don't know it when they see it.

It's interesting to hear that you found you got an improvement from antivirals and other treatments but I'd be very wary of recommending these types of treatments in the absence of trials weighing up the risks and gains with good results and I think we all know that such a trial has yet to be published and replicated.
There is no doubt that what works for one patient diagnosed with "CFS" may not work at all for others with the same diagnosis. It is almost certainly true that everyone under the "CFS" umbrella does not have the same illness. For that reason alone it is nonsense to suggest that any treatment that isn't confirmed to be effective for all CFS patients should not be used for any CFS patient.

There are no published and multiply-replicated medical treatments for ME. Are you suggesting that patients should use no treatments for 20 years or more until that research is done, even when the medications are well studied and are used for the same symptoms in other illnesses? Valcyte is established treatment for CMV and HHV6 infections. The trials are done. And published. And replicated.

Just because a patient has ME/CFS, that doesn't mean s/he shouldn't take Valcyte for a CMV or HHV6 infection because Valcyte has not been studied as a treatment for CFS. It doesn't need to be a treatment for CFS. It's the standard treatment for the known infection. Should ME/CFS patients without active CMV or HHV6 take Valcyte? I certainly don't think so, and I doubt there are many, if any, doctors who do think so.

I think some patients are having difficulty distinguishing between treatments which are a cure for ME -- there aren't any -- and treatments for known symptoms/conditions that are a part of ME. Treating symptoms and secondary conditions can make a HUGE quality of life improvement for ME patients. It's not a cure for ME, but if it makes it possible to lead a normal life, or even vastly improve quality of life for a still limited patient, it's well worth doing.

Antivirals are well-studied, well-documented, and approved treatments for certain viral infections. If you have the infection, it's perfectly reasonable to take the antiviral. It doesn't have to be an established treatment for ME; it the established treatment for the infection.

Antibiotics are established treatments for a large number of infections. If an ME patient has those infections, taking the appropriate antibiotic is intelligent, even if it doesn't cure ME.

A number of different medications are well-established treatments for various kinds of OI. If an ME patient has OI, then treating it with established OI treatments makes sense. It doesn't have to be an established treatment for ME. In fact, those treatments will probably never be trialed specifically for ME. They don't need to be. They're well-studied for the symptoms in question -- OI.

The risk is not in taking a medication that's not been trialed as a CFS treatment. The risk is in NOT taking a well-established treatment for a known condition.

I will continue to suggest that patients with documented active CMV and HHV6 consider taking Valcyte. I will also continue to suggest that patients with documented active EBV consider Valtrex or Famvir. At the same time, I will continue to (as I always have) discourage patients who do NOT have active CMV or HHV6 from trying to get Valcyte. Valcyte is a serious medication for a serious infection. If you have the infection, you should probably take the medication, even if it isn't a cure for ME. If you don't have infection, you probably shouldn't take the medication for it. Simple. :)

In my opinion, sitting around avoiding established treatments for known symptoms and secondary conditions because those treatments are not trialed treatments for CFS is a sad waste of a human life.
 
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lansbergen

Senior Member
Messages
2,512
If the immune system is already struggling to contain and fight the infection, it's foolish to argue that because it still has some capability to fight we should not provide the assistance it needs to succeed.

That was my starting point. It worked for me.
 

Tristen

Senior Member
Messages
638
Location
Northern Ca. USA
In my opinion, sitting around avoiding established treatments for known symptoms and secondary conditions because those treatments are not trialed treatments for CFS is a sad waste of a human life.

Agreed. Even if only partially healed, it may be life saving. I don't know how much longer I could have tolerated severe bed bound ME. If not for AV's giving some of my health back....well, not sure what would have happened. Just know I'm now able to tolerate and manage remaining symptoms much easier.
 
Messages
60
And if you went to a cancer forum, and peddled LP as the "cure" for it, you'd get a lot of extremely offended responses. We're offended for the same reason. We have a chronic (biologic) neurological disease which involves various objectively documented biological abnormalities which cannot result from thought processes or inactivity.

Please try to imagine how hurtful it would be for a cancer patient to be told that they can be cured if they want to badly enough, with a three-day course. And with the message that if they fail to be cured, it's because they weren't trying hard enough. You and LP are making us feel that way, and you don't seem to care.

We have infections verified by blood tests. We have chronic inflammation verified by blood tests. We have a unique biological disability verified by a two-day CPET. Unless you can objectively verify that you had these problems before LP, and lack them after LP, we are really not going to be interested. Your subjective self-report of your illness and the "cure" are one small step above "completely useless" as persuasive evidence.

We're happy to respect that you feel better after LP. But we're not willing to close our eyes to the scientific evidence, our objective lab results, or our own subjective experiences, and blindly believe that changing our thinking will cure our disease.
Objectively, I was diagnosed with ME/CFS - nothing I tried helped - then I did the LP and my life has been transformed - these are indisputable facts, not subjective hearsay. If you want to claim I was misdiagnosed then so be it.
 
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Messages
60
I'm rereading your posts and it seems to me that you use a language similar to these types of psychological therapies. Kind of like blame the sick person if they don't believe or get well after therapy. Very defensive imo
It wouldn't be a surprise if I was defensive. But I'm not - I merely report what's happened to me (and a close colleague). Diagnosed with ME/CFS, cured by LP
 
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Messages
60
The question is whether you have been cured of ME/CFS, and whether you even had it or not. You mentioned being able to work full time. I find this statement conflicts with a diagnosis of ME/CFS. You'll find it difficult to convince an educated patient that you had ME/CFS without objective improvement on previously abnormal lab tests.
No - my question is has anyone ever been cured of ME/CFS
 
Messages
60
If you really believe this: Please see your psychiatrist and have your lithium levels checked. They might be too low.

If you are doing this for financial gain: Please get your hands off this forum greedy bastards.

People like you are not helping. They are making our lives far worse and complicated.



Bingo.

If they really cared about people they would release the program for free. In the meantime people are dying of ME.



Not only did it cure you within a short period of time it did also make your life 'heaven'.
Something that even many healthy people are striving for without ever achieving it.

Most religions promise paradise only in afterlife and this one gets you there in a few days for just £650.



OK. At 51 you got the fitness level and energy of a 20 year old just in 3 days. Did your hair grow back as well?

Personally i don't view this as proof that LP works. Quite the contrary. Something doesn't sound right here. Either you have been completely brain-washed and are currently out of touch with reality or you aren't accurately reporting your results.

Then it is just enhanced CBT quackery. Strange that there aren't many people reporting similiar results with CBT most have poor results. I have yet to hear from someone who got into paradise with it. Why should this one be so much better? There is no reason to believe that this one is sooooooooo much better. It might be more effective at brainwashing certain individual though.

From an amateur analyst perspective i would say your subconcious is trying to free itself from the artificially imposed perception of well-being influencing your rational mind into posting here to hear from others that what you are doing isn't working. I think this makes at least as much as sense as LP.
I still have a full head of hair, have never needed the skills of a psychiatrist, have never been prescribed lithium, your last paragraph is incomprehensible so I can't comment on that one. There are too many people visiting here that might benefit as I have from LP and they need to have a balanced objective view of someone who has experienced its effect first hand, rather than listen to hearsay and rumour from those that haven't
 
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SOC

Senior Member
Messages
7,849
Agreed. Even if only partially healed, it may be life saving. I don't know how much longer I could have tolerated severe bed bound ME. If not for AV's giving some of my health back....well, not sure what would have happened. Just know I'm now able to tolerate and manage remaining symptoms much easier.
Same here. I was mostly bedbound when I started Valcyte. I couldn't even read. I couldn't think straight. I couldn't stay upright more than a few minutes. I felt like crap 24/7 -- the whole set of major flu-like symptoms. My life was nothing -- laying around in bed staring out the window. Like Tristen, I'm not sure how much longer I could have tolerated that non-life.

Now I work part-time at an easy job -- tutoring -- where I don't have to walk much and my employers understand and cope with my limitations. I'm not cured, by any means. I'm probably about a 5 on the PR activity level scale. But the difference between a 1 and a 5 is huge. I can drive. I can interact with other people. I can earn some money. I can do a little light housework. And a don't feel sick every minute of every day. I mostly feel fine. I have a life -- the life I didn't have prior to AVs and OI treatment.

Why would I pass that up just because it's not a cure or even a remission?
 

SOC

Senior Member
Messages
7,849
Objectively, I was diagnosed with ME/CFS - nothing I tried helped - then I did the LP and my life has been transformed - these are indisputable facts, not subjective hearsay. If you want to claim I was misdiagnosed then so be it.
How, exactly, were you "objectively" diagnosed? Objectively means lab tests, not some physician's opinion. Which lab tests did you have that make you feel you were objectively diagnosed? NK cell function? CPET? Other immune abnormalities?

How did those objective tests change after LP? Without evidence of change in objective measures -- relevant lab tests -- there is no objective evidence that LP had any effect whatsoever.

"I did LP and my life has been transformed" is exactly subjective hearsay. There is nothing objective or factual about it.
 

Mij

Messages
2,353
@Dster your wrote: "This isn't hearsay and anecdote by the way, this is fact. The second person I have described before on this site, again what I am about to say is fact not anecdote. She is a colleague who I have worked closely with throughout her illness (extremely bad CFS/ME) for 5 years. Did the process and was cured, pretty much overnight"

I just can't take you seriously.
 

A.B.

Senior Member
Messages
3,780
After Dster's anecdotal cure had been questioned, it has now become indisputable fact:

Objectively, I was diagnosed with ME/CFS - nothing I tried helped - then I did the LP and my life has been transformed - these are indisputable facts, not subjective hearsay.

Multiple requests to see the abnormal lab results that normalized after LP are ignored, presumably because there never were any such abnormalities. Instead, his answer to my request becomes

No - my question is has anyone ever been cured of ME/CFS

Shifting the discussion from a hard question to another topic.

There are too many people visiting here that might benefit as I have from LP and they need to have a balanced objective view of someone who has experienced its effect first hand

But dodging hard questions is not a balanced objective view.