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

[SOC]

My definitions of remission and recovery/cure are essentially the same as your internet finds. Remission may be temporary, and may require continuing medication or other treatment to maintain it, whereas cure/recovery is permanent. An example of remission is in relapsing/remitting MS. I am not sure what complete remission would be - a temporary complete cessation of symptoms (and signs)?

You seem to be defining remission and recovery in the opposite way to normal usage, and I am getting confused!

Bleah. I'm confusing myself, too, trying to describe what I think while trying to figure out what I think others are trying to say. Too messy. I'm not sure it really matters, but I'll try to clarify, FWIW.

I think of a remission in line with the definitions I found -- it doesn't require a complete cessation of symptoms, just a decrease or diminution. It may require treatment to maintain. A complete remission means (in the cancer world, at least) all signs and symptoms are gone, but you are still subject to relapse.

This is from the Wiki page "Cure". It might help the conversation, or it might confuse it further because it says a remission is the absence of disease activity rather than decrease or diminution used in other definitions. This article defines recovery as "restoration of health or functioning" and doesn't say anything about signs, symptoms, or continuing treatment.

I think there may not be a single, clear, agreed upon definition of remission or recovery.

Remission[edit]
Remission is the state of absence of disease activity in patients known to have a chronic illness that cannot be cured. It is commonly used to refer to absence of active cancer orinflammatory bowel disease when these diseases are expected to manifest again in the future. A partial remission may be defined for cancer as 50% or greater reduction in the measurable parameters of tumor growth as may be found on physical examination, radiologic study, or by biomarker levels from a blood or urine test. A complete remission is defined as complete disappearance of all such manifestations of disease. Each disease or even clinical trial can have its own definition of a partial remission.

Others[edit]

• A response is a partial reduction in symptoms after treatment.
• A recovery is a restoration of health or functioning. A person who has been cured may not be fully recovered, and a person who has recovered may not be cured, as in the case of a person in a temporary remission or who is an asymptomatic carrier for an infectious disease.

None of this really matters, though, if we're just trying to answer your question. For that, we just need to know what you mean. Are you looking for people who have absolutely no symptoms(10 on the PR activity scale)? Or just a return to relatively normal function (8-9 on the PR activity scale)?

 

[justy]

That was great! Any thoughts on why you may have relapsed from that point, specifically, any increased physical exertion or infection? Thanks.

Yes - very certain what happened.
I caught measles from ym children, despite having been vaccinated as a child. Then this turned into pneumonia, then pleurisy. This took over a year to recover from and just as I was starting to get better I had a LLETZ procedure on my cervix under local anaesthetic - I was told I could go back to work the next day and I couldn't get out of bed for two weeks and never went back to work. In the run up to this health catastrophe I had been working at a very physically demanding job (gardening) and hauling stuff around and was beginning to see an increase in some symptoms already.

 

[justy]

But no doctor had found Chlamydia before? That's one of the first connections they make.

Also, he found Bartonella, I said Lyme or other tick borne diseases... Still every patient of his that I talked to had some of those. Including you and Sushi now.

I was never tested for Cpn before - not even when I had pneumonia - the drs under the NHS are useless at that sort of thing. Bartoenlla can be transmitted by fleas, horseflies etc - it doesn not mean I was bitten by a tick.

 

[CantThink]

I was never tested for Cpn before - not even when I had pneumonia - the drs under the NHS are useless at that sort of thing. Bartoenlla can be transmitted by fleas, horseflies etc - it doesn not mean I was bitten by a tick.

I agree the NHS are so bad at diagnosing these things. It's unsurprising that you could have these underlying issues for years and only find out privately.

Interestingly, I noticed that Blue Horizons lab in the UK (which anyone can use) now offers Infectolab tests. Is Infectolab the same lab that KDM uses?

 

[RustyJ]

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 also had these tests. I believe Andrei (my memory is faulty, but I think that was his first name) was using them to filter his patients. I also had very abnormal SPECT.

I had forgotten about the metabolic rate test. Does the metabolic rate test have any credibility? Dr Emerson also ran me thru a metabolic rate test.

 

[alex3619]

I also had these tests. I believe Andrei (my memory is faulty, but I think that was his first name) was using them to filter his patients. I also had very abnormal SPECT.

I had forgotten about the metabolic rate test. Does the metabolic rate test have any credibility? Dr Emerson also ran me thru a metabolic rate test.

Hi @RustyJ, Andriya Martinovic, I think Andrei was his common use variation. Metabolic rate is generic, not specific. It does not tell you much more than that someone has little energy. Its more confirmatory than diagnostic.

 

[MeSci]

Bleah. I'm confusing myself, too, trying to describe what I think while trying to figure out what I think others are trying to say. Too messy. I'm not sure it really matters, but I'll try to clarify, FWIW.

I think of a remission in line with the definitions I found -- it doesn't require a complete cessation of symptoms, just a decrease or diminution. It may require treatment to maintain. A complete remission means (in the cancer world, at least) all signs and symptoms are gone, but you are still subject to relapse.

This is from the Wiki page "Cure". It might help the conversation, or it might confuse it further because it says a remission is the absence of disease activity rather than decrease or diminution used in other definitions. This article defines recovery as "restoration of health or functioning" and doesn't say anything about signs, symptoms, or continuing treatment.

I think there may not be a single, clear, agreed upon definition of remission or recovery.


None of this really matters, though, if we're just trying to answer your question. For that, we just need to know what you mean. Are you looking for people who have absolutely no symptoms(10 on the PR activity scale)? Or just a return to relatively normal function (8-9 on the PR activity scale)?

I mean no symptoms. Otherwise I regard improvement as - improvement. But I am interested in hearing about people who have become well enough for full-time work or education, even though that doesn't strictly answer my specific question.

 

[Folk]

I mean no symptoms. Otherwise I regard improvement as - improvement. But I am interested in hearing about people who have become well enough for full-time work or education, even though that doesn't strictly answer my specific question.

Actually IMO, there's a lot who can recover to work full time.

People here in the forum are probably the ones who have not enough money to persue the best treatment or people for whom most "usual" stuff didn't work.

We have kind of a vicious view here. Take KDM again for example. He said he has treated thousands and thousands of patients. We have something like twenty arround here.

 

[Jenny]

I've improved a lot while seeing a Chinese doctor:

http://forums.phoenixrising.me/inde...years-of-chinese-herbs-and-acupuncture.34053/

 

[Dr.Patient]

Actually IMO, there's a lot who can recover to work full time.

People here in the forum are probably the ones who have not enough money to persue the best treatment or people for whom most "usual" stuff didn't work.

We have kind of a vicious view here. Take KDM again for example. He said he has treated thousands and thousands of patients. We have something like twenty arround here.

Agree, A higher percentage of people recover fully within a few years, and go back to their normal lives, and you never see them in any forums. (Full recovery, when it happens, is spontaneous, with treatments for symptoms only)

A smaller percentage are like people in these forums the ones who haven't recovered like that. May be some improvements with some treatments, but extremely rare 9 recovery who still hangout here. Or had an at least 9 recovery and relapsed due to life events.

Yet smaller percentage are people who are not well enough to even write here, the ones living in closed, dark rooms, bedridden.

The outlook for this illness is a majority of them recover to almost full, a 9, and are fine. Remember, they have suffered for 4-7 years, with the full symptoms of ME/CFS even being bedridden. Recovery, if it comes, is spontaneous.

There is no reason to be pessimistic, or be dragged down by people who have been ill for decades.

 

[Dr.Patient]

Yes - very certain what happened.
I caught measles from ym children, despite having been vaccinated as a child. Then this turned into pneumonia, then pleurisy. This took over a year to recover from and just as I was starting to get better I had a LLETZ procedure on my cervix under local anaesthetic - I was told I could go back to work the next day and I couldn't get out of bed for two weeks and never went back to work. In the run up to this health catastrophe I had been working at a very physically demanding job (gardening) and hauling stuff around and was beginning to see an increase in some symptoms already.

I think physical exertion will lay the ground for increased susceptibility to infection...

 

[charlie1]

Some of us are too far away to get testing for these viruses/Lyme etc that many of you talk about. And even if we could afford (physically and financially) our flights, hotels, consultations and testing etc. we are afraid of the intense PEM that will follow and perhaps leave us worse off. If follow ups are required, it will be next to impossible. Also to consider is the very long wait lists to be seen by the well known CFS doctors. I will see what a functional medicine doctor 3 hrs away can do to help me.
Despite the IOM report, I'm more discouraged/bummed now than I've been in a long time

 

[Dr.Patient]

Some of us are too far away to get testing for these viruses/Lyme etc that many of you talk about. And even if we could afford (physically and financially) our flights, hotels, consultations and testing etc. we are afraid of the intense PEM that will follow and perhaps leave us worse off. If follow ups are required, it will be next to impossible. Also to consider is the very long wait lists to be seen by the well known CFS doctors. I will see what a functional medicine doctor 3 hrs away can do to help me.
Despite the IOM report, I'm more discouraged/bummed now than I've been in a long time

Some patients do not look into the ?possible benefits of traveling to see multiple physicians vs. the definite occurrence of PEM. Doing this is actually ruining their chances of recovery.

Seeing an ME specialist once, and following up with an understanding local physician is adequate.

 

[jess100]

This is a fundamental question, but I can't find a thread on it.

I read of people recommending ME doctors, and people planning to see those renowned for treating ME, and people actually being treated by them.

But has it actually WORKED for anyone? Is there anywhere where such successes are listed? Any statistics for individual ME doctors?

This is an excellent question and one that I think is worth pursuing until we have some clear data. Frankly I don't believe the success statistics given by doctors because how would that ever be verified? I think this is the place to get the information we need to start to sort through this.
I know 2 people on this site have had success at OMI in California. That's reason enough for me to go there, and I will be posting soon asking if anyone wants to share a hotel with me-as that could make it more affordable for some of you to travel if it works out.
But if anyone has had success (remission, significant improvement) please post the doctor and how much you've improved so we can review that and make an informed decision. We need to know who are the doctors who are thoughtful and meticulous. Who are the ones that are willing to keep trying to find an answer?

 

[MeSci]

The outlook for this illness is a majority of them recover to almost full, a 9, and are fine. Remember, they have suffered for 4-7 years, with the full symptoms of ME/CFS even being bedridden. Recovery, if it comes, is spontaneous.

Where is this info from, and what do you mean by 'a majority'.

This PR article quotes various statistics on prognosis. Here is one on Health Rising.

 

[charlie1]

I know 2 people on this site have had success at OMI in California.

If you know, can you tell us what symptoms in particular those 2 people suffered with? I want help with PEM , OI and very low energy level in general, esp in the mornings.

who is KDM?

 

[charlie1]

The Health Rising article is depressing

 

[Gingergrrl]

If you know, can you tell us what symptoms in particular those 2 people suffered with? I want help with PEM , OI and very low energy level in general, esp in the mornings.

who is KDM?

@charlie1 I might be one of the people you guys are referring to (not sure?!) but I am having severe arm & neck pain and typing almost impossible for me now and I am also getting ready to go to parent conferences at my dtr's school. I can talk to you another time about OMI (maybe on phone?) until I can heal my arm and type again, and someone else can explain who KDM is. Sorry had to stop typing in PM and only b/c of my arm and was enjoying talking w/you very much.

 

[charlie1]

HELLO @Gingergrrl !!!!! I've learned what you've been up when you've posted on certain threads I'm following, such as this one! I read about your arm and pinched nerve in neck. Ouch. Thanks for letting me know what's going on with you!! Take care of yourself! Talk with you when you're up to it

 

[Sushi]

who is KDM?

Dr. Kenny De Meirleir--practices in Brussels, Reno, Nevada and Oslo, Norway. http://himmunitas.org/pages/english/index_en.php?page=home_en