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

Gingergrrl

Senior Member
Messages
16,171
That's no certainty. Lots of diseases have no cure, even with lots of funding (HIV, MS, Parkinsons, ALS, etc, etc). I think diseases that can be cured are probably the exception.

With an advanced, complex disease like ME/SEID, it is probably unrealistic to expect a cure in the near future. Lots of diseases can be managed though, and this is where our hope lies, I believe.

@adreno thank you for clarifying what I was trying to say and I agree with you. What I meant was that if ME/SEID got the federal funding of those other illness, then we would at least have a chance of finding the cure and certainly better treatments. Right now our doctors and scientists are having to raise funds privately instead of being able to just focus on the science and medicine.
 

Folk

Senior Member
Messages
217
@adreno thank you for clarifying what I was trying to say and I agree with you. What I meant was that if ME/SEID got the federal funding of those other illness, then we would at least have a chance of finding the cure and certainly better treatments. Right now our doctors and scientists are having to raise funds privately instead of being able to just focus on the science and medicine.

On the other hand, there seems to be some kind of "all or nothing" factor on this disease.

Some people just recover out of nowhere. Rituximab did full remissions on some.
Even with no research informed doctors are able to treat it and achieve improvement.

If we look at other diseases like HIV or MS things are different
In the early ages of AIDS people were just dropping dead like flies, and with no research they would keep dying, there was no way to keep it at bay


I think the problem in ME/CFS is most people go for so long without treatment and being considered crazy that they end up miserable.

And since we lost 20 years on the psychological bullshit, there was no great breakthroughs. Which fortunatelly we're seeing now!
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
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 :(

Hi Charlie1,
I hear you. I was living in Canada (NS) until recently, and through most of my nearly 14 years of illness. Every doctor I read about seemed an awful long way away. I only made one trip out of Canada, to Arizona, in about 10 years (and that half-killed me, but I was worse at the point that I am now).

I think your situation is exactly why this forum should be asking the sort of question MeSci had the sense to ask (I'm sure I was thinking it when I first joined up then somehow I got sidetracked and forgot all about it). I imagine you would consider travelling if you felt confident that what you got at the end of end had a solid chance of doing you some good, but solid information about outcomes/progress is hard to find. There is, as someone mentioned above, obviously an awful lot of data being generated by the various specialists globally, but not much of it gets out and there doesn't seem to be any effective way of collating it.

I'm now back in the UK and am booked to see KDM (De Meirleir) in Belgium in May. I will definitely provide as much information as I can on here, at the time and in the months (years?) afterwards.

Best of luck to you
:)
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.

Im afraid that if you are in the UK this is not possible. NHS doctors will not treat you based on findings from Dr's outside of the NHS, private Drs are constrained by how they can practice due to GMC hounding those who try to treat 'outside the box'. I have seen an M.E spcilaist and he wishes me to have treatments such as IVIG and IV antibioitcs that are impossible to source in my own country and I am now too ill to travel regularly for treatment.
 

charlie1

Senior Member
Messages
315
Location
Canada
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.

Obviously there's the possibility of a successful outcome but I think it's wise to consider the risks of long distance travel vs the no guarantee of better health and for some, quite likely even a decline in health. I am glad that the 'helpful' doctors exist and that more earnest research is now underway but unfortunately, until that knowledge & expertise trickles outward to include most large cities of any country, many of us won't take the risk of travel to the famous clinics. ie. IOM in California

My PEM can sometimes be quite severe after local outings or even after light mental stimulation. I'm learning to respect that and realize that pushing myself to fly out to the experts might be the very thing that ruins my chance of recovery.
This doesn't mean I won't ever travel for help, I'm just reiterating the damage PEM can do with regards to getting well.
Definitely it's a personal choice as each of us has a unique symptom make-up.
 

charlie1

Senior Member
Messages
315
Location
Canada
I'm now back in the UK and am booked to see KDM (De Meirleir) in Belgium in May. I will definitely provide as much information as I can on here, at the time and in the months (years?) afterwards.

Well, now you're closer to a reputable doctor :) Please keep us posted. Best of luck to you!
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Definitely it's a personal choice as each of us has a unique symptom make-up.
Agreed. I think each person probably knows how they would likely react to a long trip and respecting that is important. I chose to take an international flight to see a doctor but I arranged to get there quite a few days ahead and just rest until my appointment. That worked for me, but might not for others.

Sushi
 

SOC

Senior Member
Messages
7,849
Definitely it's a personal choice as each of us has a unique symptom make-up.
Absolutely! We each know best what our bodies can handle.

I do think, however, that some patients don't realize there are ways to reduce the physical demands of travel. You can taxi to the airport (wearing headphones and dark glasses), and be wheelchaired from curb to plane and plane to curb (again with headphones and dark glasses). Taxi to the hotel (the wheelchair attendant will take you to the taxi). Go straight to bed as soon as you get to the hotel. Order room service if your diet allows. Don't go anywhere except to the specialist's office for your appointment and stay in bed the rest of the time. Plan rest days at the hotel before and after the appointment if you need them.

You don't have to walk, you don't have to pick up or carry luggage. You don't have to drive. Hotels will give you a room near a door or the lobby if you tell them you have health issues that require it. If you act like the very sick person you are, most people are helpful and will treat you well.

If you have a travel companion, it's even better because your companion can even wheelchair you in and out of the hotel and doctor's office. You can act like luggage -- just sit in the chair the whole trip and shut out everything. I've done that a number of times, particularly when I was in the stage where I PEMed walking across a room. :p

I'm not saying this will work for everyone. I'm just saying that too many PWME want to act "normal" when they travel and then feel they can't travel because they can't do it like a healthy person does. The good news is: we don't have to! We're very sick people and we can (and should) travel like very sick people.

I'm also not saying it's 100% easy to travel by air to see a top specialist. When I was bedbound, I had to plan far in advance, rest even more before and after the trip, and sometimes I still got PEM. But it was worth feeling worse for a couple weeks a few times to get the treatment that moved me from bedbound to working full-time (after a fashion). After a few twice-a-year trips to the specialist, the treatment improved me enough that I don't PEM from the travel (as long as I'm smart about how I travel).

Long-distance travel to see a top specialist is definitely not for everyone. We all need to make that kind of decision based on our understanding of our individual condition. But I suspect too many people are depriving themselves of a very real opportunity for significant quality of life improvements because of incorrect perceptions about the difficulties of traveling as a very sick person.
 

SOC

Senior Member
Messages
7,849
Seeing an ME specialist once, and following up with an understanding local physician is adequate.
I doubt that's realistic for the vast majority of us. There are very, very few patients who have reported finding an understanding local physician. My community has a large medical monopoly whose so-called EBM policy does not treat ME/CFS as a biomedical condition. No local doctor will cooperate with my specialists for testing and treatment, and my specialists have tried. Now my specialist writes the scripts, and testing orders which I can have done locally. I only need to see her once a year for her to be able to do that. It's a whole hell of a lot less stressful and physically demanding than going into my local clinic for any kind of treatment.

As for "following up with an understanding local physician is adequate": I'm not settling for adequate. I want to get the best quality of life I can with this damned disease, so I'm looking for the best treatment I can get, not adequate treatment.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Absolutely! We each know best what our bodies can handle.

I do think, however, that some patients don't realize there are ways to reduce the physical demands of travel. You can taxi to the airport (wearing headphones and dark glasses), and be wheelchaired from curb to plane and plane to curb (again with headphones and dark glasses). Taxi to the hotel (the wheelchair attendant will take you to the taxi). Go straight to bed as soon as you get to the hotel. Order room service if your diet allows. Don't go anywhere except to the specialist's office for your appointment and stay in bed the rest of the time. Plan rest days at the hotel before and after the appointment if you need them.

You don't have to walk, you don't have to pick up or carry luggage. You don't have to drive. Hotels will give you a room near a door or the lobby if you tell them you have health issues that require it. If you act like the very sick person you are, most people are helpful and will treat you well.

If you have a travel companion, it's even better because your companion can even wheelchair you in and out of the hotel and doctor's office. You can act like luggage -- just sit in the chair the whole trip and shut out everything. I've done that a number of times, particularly when I was in the stage where I PEMed walking across a room. :p

I'm not saying this will work for everyone. I'm just saying that too many PWME want to act "normal" when they travel and then feel they can't travel because they can't do it like a healthy person does. The good news is: we don't have to! We're very sick people and we can (and should) travel like very sick people.

I'm also not saying it's 100% easy to travel by air to see a top specialist. When I was bedbound, I had to plan far in advance, rest even more before and after the trip, and sometimes I still got PEM. But it was worth feeling worse for a couple weeks a few times to get the treatment that moved me from bedbound to working full-time (after a fashion). After a few twice-a-year trips to the specialist, the treatment improved me enough that I don't PEM from the travel (as long as I'm smart about how I travel).

Long-distance travel to see a top specialist is definitely not for everyone. We all need to make that kind of decision based on our understanding of our individual condition. But I suspect too many people are depriving themselves of a very real opportunity for significant quality of life improvements because of incorrect perceptions about the difficulties of traveling as a very sick person.

I get nauseous just travelling about 20-25 miles in a car. Maybe travel-sickness medicine would help. I travel OK on buses as long as they are driven gently and there aren't too many bumps or bends. The nearest station is about 15 miles away. The nearest airport is probably a good deal further. I would have to arrange care of my cats, and the plants that I sell. I would need money that I don't have. At every stage I would need special food and drink. And I have no one to help me.

It's all too much to manage!

EDIT

Yet I only consider myself moderately affected. And I am far from convinced that any doctors have the answers - hence this thread.
 

CantThink

Senior Member
Messages
800
Location
England, UK
@MeSci

I understand.:hug: I know for me it would only be possible with the aid of my parents - one to assist me and one to hold the fort here (and look after my pets).

If I had to do it alone, I wouldn't even consider it.

To be honest, I am off the idea of seeing wn M.E. doctor, as I just don't see how I'd manage to put any of the treatment recommendations (if there were any) into practice while living in this country. It's just a big risk, and a load of stress.... Potentially for no gain.

I realised recently I think I'd rather try to exist better within my current limitations than risk deteriorating further to the point where I couldn't even function at the level I'm at now.

Maybe I'll change my mind... I think I'd be more likely to if there were more obvious recoveries from such action.
 

charlie1

Senior Member
Messages
315
Location
Canada
I realised recently I think I'd rather try to exist better within my current limitations than risk deteriorating further to the point where I couldn't even function at the level I'm at now.

Maybe I'll change my mind... I think I'd be more likely to if there were more obvious recoveries from such action.

That's exactly how feel!! We have to weigh the odds of further decline. Ugh...PEM sucks :mad:
I'm still open to traveling for help, but it just can't be done until I'm much better.
 

Billt

Senior Member
Messages
289
Location
New Orleans
@MeSci

I understand.:hug: I know for me it would only be possible with the aid of my parents - one to assist me and one to hold the fort here (and look after my pets).

If I had to do it alone, I wouldn't even consider it.

To be honest, I am off the idea of seeing wn M.E. doctor, as I just don't see how I'd manage to put any of the treatment recommendations (if there were any) into practice while living in this country. It's just a big risk, and a load of stress.... Potentially for no gain.

I realised recently I think I'd rather try to exist better within my current limitations than risk deteriorating further to the point where I couldn't even function at the level I'm at now.

Maybe I'll change my mind... I think I'd be more likely to if there were more obvious recoveries from such action.
CantThink, I am fairly new here , but how do you guy's make it ? I mean my son can't work and we are going through our saving trying to some help for him to at least get him working and supporting himself again. Seems like a catch 22, to sick to work, no money or energy to get anywhere to try something ! Kind of discouraging, but there must be some light at the end of the tunnel....... Be well
 

SOC

Senior Member
Messages
7,849
That's exactly how feel!! We have to weigh the odds of further decline. Ugh...PEM sucks :mad:
I'm still open to traveling for help, but it just can't be done until I'm much better.
I tried that... only I just kept getting worse, not better. So by the time I realized I absolutely had to get myself to a top specialist, I was bedbound and the travel was much harder than it would have been if I'd gone earlier. :ill:

Unfortunately, there's no completely good solution for those of us who live very far from the top specialists. There's a real damned if you do, damned if you don't aspect to it. All we can do is make the best guess we can about what is best for our health and go with it. For me, the travel under miserable circumstance (until I started getting significantly better) was worth it, but that won't be true for everyone.
 

charlie1

Senior Member
Messages
315
Location
Canada
I tried that... only I just kept getting worse, not better. So by the time I realized I absolutely had to get myself to a top specialist, I was bedbound and the travel was much harder than it would have been if I'd gone earlier. :ill:

Thanks for your input SOC. That is certainly something to consider when deciding upon the pros and cons of travel.
 

CantThink

Senior Member
Messages
800
Location
England, UK
CantThink, I am fairly new here , but how do you guy's make it ? I mean my son can't work and we are going through our saving trying to some help for him to at least get him working and supporting himself again. Seems like a catch 22, to sick to work, no money or energy to get anywhere to try something ! Kind of discouraging, but there must be some light at the end of the tunnel....... Be well

It is discouraging, but at the same time you don't have any other choice but to keep looking forwards. I try to do things that set my mind into a relaxed state when I get really anxious about it.

I'm probably not a good person to ask as I've grown up with this disease. So in a funny kind of warped way this is my normal to my parents, and we are used to trying to exist within the limitations placed upon me (and ergo them). I've been a massive burden on them - financially and practically - but the flip side is I have a very close relationship with my mum and I've been able to offer support to my parents in their time of need. I do what I can, they do what they can and we muddle along. It's caused my dad a lot of depression - my situation.

The one thing I'd suggest is to try not to panic as it might end up with rash decisions being made (all with good intention).

For me this illness has not been static. That had helped me. I've had some periods of higher ability than I am now and these have saved me (they've given me some respite from being stuck and isolated). On the other habd I've also been somewhat worse than I am now. There's been little rhyme or reason to it.

When I struggle particularly is when I feel as if the cure or healing is in my hands - it puts a lot of pressure on me. I feel as if time is rushing by and I've somehow missed the boat! I feel guilty and responsible for not getting better or improving.

You might find the book: How to be Sick, by Toni Bernhard, useful. It's written for chronic illness sufferers and their caregivers/family. The author has M.E., and addresses a lot of feelings/issues related to being ill.
 

charlie1

Senior Member
Messages
315
Location
Canada
For me this illness has not been static. That had helped me. I've had some periods of higher ability than I am now and these have saved me (they've given me some respite from being stuck and isolated). On the other habd I've also been somewhat worse than I am now. There's been little rhyme or reason to it.
That's the insidiousness of this illness.! Just when it looks like I may be gaining some headway, BAM, I'm hit hard for days or weeks without knowing why! That drives me crazy !!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
That's the insidiousness of this illness.! Just when it looks like I may be gaining some headway, BAM, I'm hit hard for days or weeks without knowing why! That drives me crazy !!

Yep. I have had times when I thought - I must be doing something right - I suddenly have more energy, or a hated symptom disappears, and then the improvement is gone again. Sometimes I have started to dream, and plan - maybe I can cycle again; maybe that's the end of that damned symptom, and then...gone.

I also understand what @CantThink said:
I realised recently I think I'd rather try to exist better within my current limitations than risk deteriorating further to the point where I couldn't even function at the level I'm at now.

For years I was thinking and saying the same thing, I think in response to suggestions I try this or that. I just could not risk it. I could just keep my head above water financially at the time, and had been stable for years at a manageable level. Then I suddenly had severe symptoms, they were not correctly diagnosed, I had further problems which I now know were related, and then another severe episode that landed me in hospital. I couldn't get back to the previous baseline.

Since finally discovering the probable cause - an adverse effect to a prescribed ACE inhibitor - I have had to keep a lid on my rage at the failure of numerous doctors to diagnose the cause, the loss of income, the worsened health, the incredible stress of fighting the medical profession who were treating me appallingly, blaming me, accusing me, insulting me...frankly I want to keep as much distance between myself and doctors as possible. If it were not for a radio programme, a post on here and my own scientific understanding, I would still be taking that damned drug.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It seems strange that I haven't seen a thread about this before. I worry that people are being told how wonderful various doctors are, and maybe they are spending a lot of money - and maybe going through a lot of unpleasant reactions - with unjustified expectations.

I'm actually quite shocked no one has thought to ask this before and that I never thought to ask this either. (I guess we can blame our brains).

I've no idea about the well known famous ME/CFS ones but I do know that some with ME/CFS even on this website, have been helped very much by good doctors esp where antivirals have been used.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

That was really interesting thanks. My remission was 2-3 years. (maybe its hard to beat the odds of another ME/CFS trigger hitting, so one gets the illness back. In my case I got a normal virus going around and then ended up back with this).