Has anyone achieved remission or recovery from treatment by any doctor?

[SOC]

With whatever things doctors can do today, they can only improve the patient slightly.

Nope, not true. There are no guarantees, but there are plenty of people who have improved more than slightly under the care of top ME/CFS specialists.

No remissions or recoveries are possible with any doctor treatments.

On what evidence do you base that absolute statement? It is my opinion that a cure is not possible at this point in time, but I acknowledge that that's an opinion based on belief, not an absolute fact.

If a treatment given by a doctor or by the patient himself causes improvements like a year later, it would be difficult to rule out spontaneous improvements.

In my opinion, if a given treatment does not make a noticeable improvement in about 3 months or so, the credibility of that treatment (vs.spontaneous improvement) is very much in question.

A number of treatments show some improvements in the first 3 months, but to see significant improvement make take longer duration treatment.

There are people who have recovered after a few years, and they attribute that to their own treatments, but here the recovery is spontaneous.

I think you are being overly pessimistic and grossly oversimplifying a complicated situation.

There may be some cases where patients have spontaneous remission, but the patient population is not stupid. Most of us can distinguish between the effect of a treatment and spontaneous recovery. People who slowly improve over time, with or without treatment, may be experiencing spontaneous improvement. That does not occur for most of us. We do not improve without treatment (and often decline) and we do improve with some treatments.

If a patient is declining rapidly, starts a new treatment and begins to improve, even if slowly, it is not likely that the patient coincidentally had a spontaneous improvement at exactly the same time they began treatment. Similarly if a patient has been stable at a certain level and then begins to improve with some treatment, it is far more likely the treatment is having a positive effect than that a spontaneous remission happened out of nowhere at exactly the same time.

It's also clear that the improvement is not spontaneous if the patient improves with a treatment, declines again when treatment is withdrawn, then improves again when treatment is begun again.

I understand the fact that desperate patients run from pillar to post, from good physicians to fringe doctors, and spend lots of money. In such cases, however, there is more damage done to the body by the traveling itself, than any possible benefit that can be gained.

I find that attitude very condescending. I am an intelligent person educated on at top university in a scientific field. I understand logic and critical thinking better than most doctors. I'm highly analytical and am not subject to placebo effect. I have the skills to evaluate the effectiveness of treatment protocols for myself, and I use those skills. I have not run from pillar to post. I have not been to fringe doctors. I have not wasted money on questionable treatments that didn't help me. Everything I've spent a significant amount of money on has given me a significant improvement. Most of my treatments are not extraordinarily expensive.

I think it is difficult for anyone who hasn't been under the care of a top ME/CFS to understand what it is that they do. There seems to be a lot of misinformation flying around -- mostly from people who haven't spent a reasonable amount of time following the treatment plan of a top doc.

No ME/CFS specialist I saw claimed to have a cure for ME/CFS. None of them claimed to be able to make a rapid improvement from severely ill to fully functional. They all felt they could make some degree of improvement in my functionality, and they all did, to varying degrees.

 

[Folk]

Well, Dr. De Meirleir say he expects his patients under 30 years old to improve 90% and his patients older than 50 years old to improve 50%.

He also say that at least 70% have great improvements with his care.

So either significant improvement exists or he is lying.

Some people doing Rituximab have achieved full recovery also.

 

[lansbergen]

If a patient is declining rapidly, starts a new treatment and begins to improve, even if slowly, it is not likely that the patient coincidentally had a spontaneous improvement at exactly the same time they began treatment. Similarly if a patient has been stable at a certain level and then begins to improve with some treatment, it is far more likely the treatment is having a positive effect than that a spontaneous remission happened out of nowhere at exactly the same time.

It's also clear that the improvement is not spontaneous if the patient improves with a treatment, declines again when treatment is withdrawn, then improves again when treatment is begun again.

Well said

 

[Hip]

Dr John Chia has reported some pretty good results from his oxymatrine treatment, for example, from fully bedridden to back to work for 3 years (what happened after those 3 years, I don't know) — see this post. However, I am not sure how many cases like this he has.

Dr Chia considers Chlamydia pneumoniae to be one of the treatable causes of ME/CFS. Chia's paper is here: Chronic Chlamydia pneumoniae Infection: A Treatable Cause of Chronic Fatigue Syndrome.

This guy said he went into remission from ME/CFS just using the anti-psychotic drug risperidone (Risperdal) at 0.5 mg daily. Risperidone is one Dr Jay Goldstein's top 23 drugs for ME/CFS treatment.

@zzz went into full remission from severe ME/CFS for nearly eight years after taking a single dose of isosorbide dinitrate (which works similarly to the drug nitroglycerin). After that he had a relapse.

@doug on this forum said he was cured/in remission from his severe mold exposure-induced ME/CFS, using these supplements. Several years later, he says he is still in remission.

In this interview, Dr. Dan Peterson said that the longest he has been able to keep an ME/CFS patient in almost total remission was 3 to 4 years.

 

[SOC]

I'm not talking about improvement, but recovery or remission as a result of treatments by ME doctors.

Maybe I should have asked what you mean by "recovery or remission" before I answered.

If you mean "cured", I can say I don't believe we have a cure, although my uncle gives every appearance of being cured.

Does "recovery or remission" mean the person no longer takes any treatment? Does it mean they can do everything healthy people could do, like run marathons? Or does it mean they can live a normal life?

A quick google on the meaning of "remission" gives:

a diminution of the seriousness or intensity of disease or pain; a temporary recovery.

Medicine/Medical.

1. a temporary or permanent decrease or subsidence of manifestationsof a disease.
2. a period during which such a decrease or subsidence occurs:

Is that what you mean, or are you looking for something closer to a cure?

 

[Hip]

Some people doing Rituximab have achieved full recovery also.

Would you have any links to anecdotal accounts of ME/CFS recovery/improvement from rituximab on blogs or forum posts?

 

[Gingergrrl]

I am attempting to take a break from posting so I can do my disability paperwork and recover from a painful pinched nerve in my neck. But I felt compelled to respond to this post. Anything I say represents my opinion and nothing more.

There is no cure for ME/CFS. It does not as of March 2015, exist. If it did, we would know about it and hear about it. I have no statistics for which doctors have the highest recovery rates and I don't believe these statistics exist. But I suspect for Lyme it is probably KDM (and other LLMD's), for enterovirus it is Dr. Chia, etc.

I initially chose to go to OMI b/c it was highly recommended to me by other patients and even though far away, we can get there within a 6-7 hour car trip. When I got there, at no point was I ever promised a "Cure" and if I had been, I would have been highly suspicious. What I was able to get that I could not obtain from any local doctor was extremely thorough viral and other testing, communication and liaison with my other doctors, and the opportunity to try medications that no local doctor would prescribe to me.

My doctor is very responsive and I am able to reach him in a medical crisis in addition to answering my ongoing questions (which are a lot!) He is kind and compassionate and he acknowledges how incredibly ill I am. He was able to diagnose me using proper criteria and has helped me with multiple disability forms and all sorts of other bureaucracy with my employer, etc.

He is also the first doctor to truly understand that I cannot take normal doses of medications that your average adult can take and I am able to start very low with meds and am currently having success with a low dose of Valcyte (that no local doctor would ever prescribe or monitor so closely for me.) Because of my many symptoms, I have constant set backs and currently dealing with a pinched nerve in my neck. These set backs take me days to weeks to recover from so my progress is never measured in a straight line.

But in any case, if I won the lottery today and money was no object, I would still keep my treatment at OMI. They are on the cutting edge of ME/CFS research and if they discover something new, as one of their patients, I will have the opportunity to try it. And with no federal govt funding, they are seeing patients and doing research with one hand tied behind their back. But they do this because they care and that dedication comes through to the patients.

So, long story short, no one is cured yet b/c there is no cure. But if I had another illness like cancer or HIV, I would try to find the top specialists in that field, just as I have done for ME/CFS, even though those other illnesses have no cure yet either. (But those illnesses do have massive govt funding which is of course a major difference.) If ME/CFS got the funding of other illnesses, we could find the cure. Blaming the doctors and specialists for not finding the cure seems like a waste of energy to me. They are the heroes in my book.

 

[Dr.Patient]

Well, Dr. De Meirleir say he expects his patients under 30 years old to improve 90% and his patients older than 50 years old to improve 50%.

He also say that at least 70% have great improvements with his care.

So either significant improvement exists or he is lying.

Some people doing Rituximab have achieved full recovery also.

A lot of patients here have seen that doctor. What do they have to say about that?

 

[Sushi]

A lot of patients here have seen that doctor. What do they have to say about that?

He has helped me a lot--even though I had already been sick for a very long time when I first saw him.

Sushi

 

[AndyPandy]

@Gingergrrl I have sent you a PM

 

[Dr.Patient]

He has helped me a lot--even though I had already been sick for a very long time when I first saw him.

Sushi

Would you please, on the PR scale, let us know what numbers were you before, and after you saw this doctor, and how long did it take for you to get there, thanks @MeSci

 

[alex3619]

I will answer this two ways.

Dr Bell pointed out in a small investigation that ten out of ten "recovered" patients were still sick with diminished lifestyle. Does recovery ever occur? We don't know. Remission to close to a full recovery does seem to be possible though.

When I was part of a research protocol back in 1993 the remission rate was 60%, 30% partial remission (that includes me), and 10% either did not improve or got worse.

This study was a complicated dietary restriction study using methods to modify eicosanoid synthesis by strictly controlling essential fatty acids.

It was shut down by our medical authorities because "CFS cannot be treated". There is a lot more to that story, but this is when I first became active on the politics. My court case was rejected though on a technicality. The doctor in question no longer treats CFS.

Here is the critical factor though. The cure rate was about 2%, and it was thought this might be due to chance alone. Remission required a demanding daily protocol. It was not easy to do for someone who is sick, but became easier if you were in a maximum responder group. It was also not easy to teach via textbook, largely due to the tools needed being inadequately capturable in print, but basic tools worked and a doctor could be trained to do this in a couple of weeks.

So, remission is something I think can be done, but cure is elusive.

This was the first time I had a metabolic rate test, using exhaled gases. My rate was way below normal. It was the first time I had a SPECT scan. I was not close to normal.

I think that as a confirming test we can use gas analysis without exercise, especially in a crash. It wont show the decline in activity after exertion, but if done enough times it would show a pattern of poor and worse results, like a jagged line.

Some of this was published, but there was never any funding available to do more.

 

[Folk]

Would you have any links to anecdotal accounts of ME/CFS recovery/improvement from rituximab on blogs or forum posts?

No I don't

But you can find it on the Rituximab section.

I know about the Fluge/Mela experience with 30 patients (15 placebo 15 ritux). 10 In the Rituximab group got good results against only 2 in the placebo

 

[CantThink]

Well, Dr. De Meirleir say he expects his patients under 30 years old to improve 90% and his patients older than 50 years old to improve 50%.

He also say that at least 70% have great improvements with his care.

So either significant improvement exists or he is lying.

Some people doing Rituximab have achieved full recovery also.

What treatments does he achieve these improvements with? Do all his patients have M.E.?

Regarding Rituximab, is that available as a treatment for M.E.? Or is it just being trialled?

 

[Sushi]

Would you please, on the PR scale, let us know what numbers were you before, and after you saw this doctor, and how long did it take for you to get there, thanks

The PR scale doesn't fit me too well (none of them really do). But using the PR scale as an approximation, I moved from about a 3 to a 6, though this is not a straight progression as some treatment protocols involve medications that have side effects that lower your functioning for a while.

I had the most clear linear progression in the first 2 years of seeing him because I hadn't yet started with these medications. Now it is more up and down, with occasional days of feeling really well, and other days of feeling side-effects. But the good days are better than anything I have experienced in many years and give me hope, though in the protocol I am in now, sustained progress is coming slowly.

Sushi

 

[Folk]

What treatments does he achieve these improvements with? Do all his patients have M.E.?

Regarding Rituximab, is that available as a treatment for M.E.? Or is it just being trialled?

It seems Dr. De Meirleir went cucko on Lyme. There's not one single patient of his that I've talked to, who he hasn't found Lyme. I don't know exactlly his treatments other than long courses abx, some herbs, probiotics, Vit D and other meds. I know that he talks about Gcmaf also but patients under his care should know better.

About Rituximab: it's avaiable but I don't know if there any other place except Open Medicine Institute in California where you can get it. Also I don't know how they decide if you're qualified to try it (I would like to know that also).

 

[Sushi]

There's not one single patient of his that I've talked to, who he hasn't found Lyme.

He did not find Lyme in me, though he did find Bartonella by PCR.

Sushi

 

[Folk]

He did not find Lyme in me, though he did find Bartonella by PCR.

Sushi

Yes I meant Lyme/other tickborne diseases.

Even though, did he ruled out Lyme or said since you have Bartonella you probably have Lyme too?

 

[Sushi]

Yes I meant Lyme/other tickborne diseases.
Even though, did he ruled out Lyme or said since you have Bartonella you probably have Lyme too?

He didn't rule Lyme out, no. I don't know if I have it. But my present protocol is aimed at Bartonella (as that was confirmed), viruses, the immune system and inflammation.

Sushi

 

[CantThink]

Thanks! @Folk