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

[taniaaust1]

Ah, I see. I would call that a cure or a complete remission. I don't believe that's achievable at this point in time, just like it's not achievable with MS, diabetes, or other chronic conditions. The only person I know who is apparently cured is my uncle and he only had mild ME/CFS -- never progressed to moderately or severely ill.

I have never heard a top ME/CFS specialist claim to be able to achieve cure or complete remission, although any of them may have some cases of full recovery/apparent cure. What the specialists I've heard talk say they can often (not always) do is improve patients' condition and functionality through symptomatic treatments. That appears to be achievable.

I had a 2-3 year full remission. I even did a marathon in that time without having a relapse. I got sick again cause I caught a virus going around at the time and ended up with ME/CFS again.

Some well known ME specialists do talk about ME patients having remissions. Dr Cheney does mention this pattern for many having a remission (my ME has followed even the symptom pattern which Dr Cheney describes).

 

[taniaaust1]

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

I'm going to disagree with this as my local physician wasn't comfortable at dealing with ME/CFS (not knowing what to do) so I needed regularly following with a ME/CFS specialist. To be reassessing and prescribing new things if needed or changing dosages etc.

All my physicians have said I need ongoing care under a ME/CFS specialist as my case is quite complex.

 

[taniaaust1]

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.

I don't find that statement to be true. One study showed that ME had around a 2%? full recovery (or it may of been less). 98% remained sick.

 

[taniaaust1]

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

If your son cant work he probably should be on a disability pension. Many of us are. It's probably unrealistic of even thinking about him getting back to work if he's at a point where he just cant work. Attempts at trying unless he's really improved could just send him downhill further and he could end up bedbound.

His only focus right now should be on keeping his illness at least stable or trying things to recover some (none with guaranteed success though), without having to focus on work.

 

[Jon_Tradicionali]

I don't find that statement to be true. One study showed that ME had around a 2%? full recovery (or it may of been less). 98% remained sick.

I'd love to know how @Dr.Patient came to such a conclusion in regards to the outlook for CFS/ME?

Majority?
Recover?
9?
Fine?
4-7 years?

It should go something like this:

It takes an average of 4-7 years for patients to be correctly diagnosed.
The majority never recover and can only ever dream of a 9 and being 'fine'.

Yes it's bleak, but that's what we are dealing with here. To package it any other way is misinformation and damaging to the need for urgency in research this disease deserves.

 

[charlie1]

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.

Dreams that have disappeared. I can relate as I'm going through that right now.

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.

Oh, that sounds awful. So sorry to hear about that. Your anger and frustration are certainly understandable. Thankfully you learned about the drug's adverse affect and you're now off of it.

 

[Billt]

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.[/QUOTE


Thanks for your input. I ill look up that book... We are trying not to panic and keep it as low key s possible. But going from healthy,working young man to almost house bound has not been easy. Something all on here I am sure can relate to. Lot's of strong people... Be well... Bill

 

[Billt]

If your son cant work he probably should be on a disability pension. Many of us are. It's probably unrealistic of even thinking about him getting back to work if he's at a point where he just cant work. Attempts at trying unless he's really improved could just send him downhill further and he could end up bedbound.

His only focus right now should be on keeping his illness at least stable or trying things to recover some (none with guaranteed success though), without having to focus on work.

He has not worked long enough to get any benefits, or that's what SSI is telling us. We are not trying to get him back to work until he can. You are right, attempting to try that would not work. We know there is no way he could do that now. Thus trying to find someone that can help. Our focus is on health first !! Thank.. Bill

 

[charlie1]

@Billt Have you seen the list of American CFS/ME Doctors linked on the CFS Roadmap?

 

[Billt]

@Billt Have you seen the list of American CFS/ME Doctors linked on the CFS Roadmap?

No, I have not. not sure CFS Roadmap ? I have seen Doctors names on here and asked people on here. So I am familiar with some names. No one close to me though, no money is an issue. Right now I am set to take him to OMI ( Dr. Kaufman ) in Cal. in April. But they just called and need to reset. So I now need to change all my plans. It is worth a try to see someone that has seen others with this. Doctors in my area just put there hands up and don't know where to tell me to go. Just say they can't help.

 

[Dr.Patient]

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).

Do you remember what virus it was, like a common cold, gi , influenza, etc

 

[Dr.Patient]

I had a 2-3 year full remission. I even did a marathon in that time without having a relapse. I got sick again cause I caught a virus going around at the time and ended up with ME/CFS again.

Some well known ME specialists do talk about ME patients having remissions. Dr Cheney does mention this pattern for many having a remission (my ME has followed even the symptom pattern which Dr Cheney describes).

Do you remember how long it was between your marathon and your onset of relapse, thanks.

 

[Dr.Patient]

I don't find that statement to be true. One study showed that ME had around a 2%? full recovery (or it may of been less). 98% remained sick.

I'm not aware of any study that followed up all patients, the fully or almost fully recovered patients are not available for follow up.

So, data showing only 5% recover are very damaging and discouraging, even a factor in some suicides that we have seen lately.

 

[Sushi]

I'm not aware of any study that followed up all patients, the fully or almost fully recovered patients are not available for follow up.

Here is a quote from the IOM report it that gives results from a study:

"Symptoms can persist for years, and most patients never regain their premorbid level of health or functioning (Nisenbaum et al., 2000; Reyes et al., 2003; Reynolds et al., 2004). The duration of ME/CFS and the potentially debilitating consequences of symptoms can be an enormous burden for patients, their caregivers, the health care system, and society."

 

[MeSci]

data showing only 5% recover are very damaging and discouraging, even a factor in some suicides that we have seen lately.

Do you have evidence for that? I guess some people might be discouraged by being told their chances of recovery were low, but others, like me, will tend to see it as a challenge! I've always tended to have a 'Yes, we can' mentality. And I have quite often proved people wrong when they have insisted that something was impossible. It's very satisfying.

The fact that many of us have had moments, minutes, hours, days or even longer of feeling and functioning well suggests to me that recovery is possible, and I reject claims that 'there is no cure' as much as I reject claims of cure by quackery.

There may be no known cure, but that means that we just need to find the cure(s).

 

[charlie1]

@Billt :
http://forums.phoenixrising.me/inde...admap-for-me-cfs-testing-and-treatment.31641/

The very first post to that thread has a link to the roadmap which offers information on testing and treatment options.
Physicians are listed at the bottom of the document.

 

[taniaaust1]

I'm not aware of any study that followed up all patients, the fully or almost fully recovered patients are not available for follow up.

So, data showing only 5% recover are very damaging and discouraging, even a factor in some suicides that we have seen lately.

I do not think we usually have ME patients suiciding due to seeing studies like this... otherwise we would be seeing far more newbies to ME/CFS suiciding but we generally don't see this. The ones who suicide usually have had ME very long term (so they don't need to see a study at all to know they have little hope of getting a lot better!!!, they know this already from their own illness).

I think of all the years I've been coming to this website, out of 100s of people I've met, I've only known one, actually two with what I'd consider to possibly be ME to actually fully recover and stay recovered. (I've seen quite a few with "chronic fatigue" recover though)

The suicides are "mostly happening" due to how ME/CFS gets ignored, patients get abused by their doctors and families and those that suicide from this usually have been trying to fight the whole system against ME/CFS poor treatment (eg many of our advocates suicide, they give up due to how badly this illness gets treated and they don't see any improvement of how those who have ME/CFS are seen by governments, doctors etc).

The lack of others knowing about how serious this illness is and the lack of support we get due to this, has been very damaging on the patient group.

Some suicides simply happen as the person is in too much pain and cant get treatment (nothing to do with seeing studies shown on that not many recover, simply they couldn't stand to live any longer!).

 

[Billt]

@Billt :
http://forums.phoenixrising.me/inde...admap-for-me-cfs-testing-and-treatment.31641/

The very first post to that thread has a link to the roadmap which offers information on testing and treatment options.
Physicians are listed at the bottom of the document.

Thank You !

 

[Valentijn]

He has not worked long enough to get any benefits, or that's what SSI is telling us. We are not trying to get him back to work until he can. You are right, attempting to try that would not work. We know there is no way he could do that now. Thus trying to find someone that can help. Our focus is on health first !! Thank.. Bill

Disability benefits should still be an option. SSDI requires having worked a certain amount, but SSI doesn't.

There are a lot of threads regarding disability benefits in this subforum: http://forums.phoenixrising.me/index.php?forums/finances-work-and-disability.22/ Some are in regards to the British system, but others should be helpful.

 

[Billt]

Disability benefits should still be an option. SSDI requires having worked a certain amount, but SSI doesn't.

There are a lot of threads regarding disability benefits in this subforum: http://forums.phoenixrising.me/index.php?forums/finances-work-and-disability.22/ Some are in regarding to the British system, but others should be helpful.

Thank you for the info.. I am so new to all this