Early vs late treatment plans

[Husband of]

Hi everyone, anyone.
I’ve searched to see if a similar thread has been posted in the past but haven’t found any. I have found some related but more specific threads which I will provide links to here.
Experimental early treatment plan
Early stage of M.E.
The benefits of early diagnosis
a few times I’ve heard people mention that perhaps different treatment should occur for those who have had cfs for a short time compared to those who have had it for a long time. Certainly if the virus is still there (assuming it was ever there and assuming people still have cfs after it goes away) you’d presume an antiviral treatment might be more value early?

And I’ve also seen an article that studied immune markers (cytokines I think), comparing those who have had cfs for less than three years to those who have had it for longer, finding that the immune system was potentially overactive at the start and under active later on (perhaps because it gets burnt out).

there is a supplement called cytokines suppress that is supposed to reduce inflammatory cytokines. The difficulty I have with this concept is that if the virus is still active then you probably don’t want to reduce the immune response? But if it’s not, and it’s just an autoimmune reaction, then you probably do want to reduce it, perhaps helping prevent it from burning out?

and, if there are treatment differences for short term vs long term sufferers (perhaps I should have used those terms in the thread title instead of early) then, for each treatment, how do you define early?

thoughts?

 

[Pyrrhus]

Personally, I haven't heard of any treatment difference between recent-onset patients and long-term patients, but some ME doctors might indeed do things differently for the two groups.

if the virus is still active then you probably don’t want to reduce the immune response? But if it’s not, and it’s just an autoimmune reaction, then you probably do want to reduce it

That may not necessarily be true... See:
https://forums.phoenixrising.me/threads/how-viruses-cause-autoimmunity.86598/

Hope this helps!

 

[Husband of]

Personally, I haven't heard of any treatment difference between recent-onset patients and long-term patients, but some ME doctors might indeed do things differently for the two groups.



That may not necessarily be true... See:
https://forums.phoenixrising.me/threads/how-viruses-cause-autoimmunity.86598/

Hope this helps!

Thanks, that’s very useful and relevant. Not that I can understand it all haha.

 

[wabi-sabi]

I would guess treatment is on severity and the type of symptoms a person has. It's possible those change over time.

 

[heapsreal]

Three years is the mark they say if you havent turned things around by then, well cfsme is pretty much forever. But even 3 years many curative type treatments havent been exhausted. But once someone feels they have tried all these options then its probably time to look more aggressively at symptomatic treatments. That may also be easier said then done.

 

[Husband of]

Three years is the mark they say if you havent turned things around by then, well cfsme is pretty much forever. But even 3 years many curative type treatments havent been exhausted. But once someone feels they have tried all these options then its probably time to look more aggressively at symptomatic treatments. That may also be easier said then done.

Do you know why they say that? Just experience? Or are there theories?

 

[heapsreal]

Do you know why they say that? Just experience? Or are there theories?

There was a study done on recovery rates i believe, possibly including spontaneous recovery rates. @Hip will have a better answer than I. I will pass it on to him 😉.

 

[keepswimming]

Interesting question @Husband of I will follow along with interest.

There was a study done on recovery rates i believe, possibly including spontaneous recovery rates. @Hip will have a better answer than I. I will pass it on to him 😉.

I would like to know about this too. When I was first diagnosed someone told me about the three year thing, and I have been thinking about it lately as I hit three years sick on 26th of this month. It feels like a big milestone. But I didn't know the evidence behind that statement either, I would be interested to learn if there is any.

 

[Husband of]

… I had suggested in my opening post that I’d link to some of the other threads I’ve seen that have bits that could add to this… just edited that post to do so.

a few people in those threads have speculated there may be benefit in doing antivirals early while the virus, rather than an autoimmune response, is the key antagonist; or they have suggested that the more time goes by the more things get complicated or the disease gets embedded in all our systems.

 

[keepswimming]

This page may be of interest. I think it may be the study you were referring to @Husband of

 

[Learner1]

@Husband of ME/CFS is a complex multi-organ system illness with multiple etiologies and multiple drivers. It is highly individual, so there is no one-size-fits-all treatment strategy, phased by time of illness.

It is, however, better If you can nip things in the bud before a cascade of secondary and tertiary effects develops and complicates matters, making it more difficult to find a way out.

I've attached two documents that I have found helpful in investigating my illness and finding treatment. They are both several years old, but have some good information. The one thing that's missing from both is things that impact the neck structurally to create pinched nerves, which lead to a wide variety of symptoms. I have been able to greatly improve By identifying discrete problems and getting treatment for them and know of other patients who have as well.

Thoroughly testing for viruses and immune dysfunction is critical. Many of us have chronic infections which lead to a host of other problems, and most doctors miss them because they do not test adequately. Supporting adrenal and thyroid function, as well as attention to other hormones is helpful as well. My doctor put me on hydrocortisone after doing a 24-hour saliva cortisol test, and it helped me to function while I solved other problems. Nutritional support is important too - eating a nutrient dense, high quality diet, as well as a good multivitamin, such as one by Thorne Research, is a good start, but finding a good functional medicine doctor or Bastyr-trained naturopathic doctor would be helpful as well.

Also, the concept of phasing is a good one. There are treatments I tried early on that were unsuccessful because my body wasn't ready for them, but then later on, they were very helpful. So, just because something doesn't work right out of the gate doesn't mean it's not a good intervention. That's why working with experienced and thoughtful doctor who can help you navigate and provide a phased approach would be helpful.

As far as doctors, there are few specialists and they are difficult to see. Finding a doctor near you who cares, and is willing to think outside of the box and navigate this with you would be the most helpful.

 

[Husband of]

This page may be of interest. I think it may be the study you were referring to @Husband of

Yes!! Thanks, that was the paper. And that article about it does hint at why the 3 year mark…
“ As lead author Prof Mady Hornig, director of translational research at the Center for Infection, points out, ME/CFS patients seem to be flush with cytokines until around the 3-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop. The results support the idea that ME/CFS may reflect an infectious ‘hit-and-run’ event. Patients often report getting sick, sometimes from something as common as infectious mononucleosis, and never fully recover. These infections throw a wrench in the immune system’s ability to quiet itself after the acute infection; the immune response becomes like a car stuck in high gear”

although, the theory of immune exhaustion doesn’t necessitate that prior to that the immune system wasn’t still responding to something - kidney bacteria under Markovs theory, or virus in the tissue under chias theory, or an autoimmune response under other theories.
Immune exhaustion, though, could explain why people tend to accumulate allergies and sensitivities as their illness goes on. And, if certain treatments require a response from the immune system in order to be effective, this may be more difficult if the immune system is exhausted and therefore potentially not functioning properly. For example, This could be why, if Markov is legitimate, his patients have recovered more quickly the shorter their illness duration. Or, simply that the bacteria or virus has been able to grow/replicate more once the immune system gets exhausted.

Suppressing the immune system in the early stages, but after an acute infectious stage, could be viable if it were the case that the immune system has just got stuck, and their is no remaining pathogen that needs to be fought. Otherwise, if there is still a pathogen, you could just make things worse. In that case, getting rid of the pathogen is surely the right approach.

 

[Husband of]

@Husband of ME/CFS is a complex multi-organ system illness with multiple etiologies and multiple drivers. It is highly individual, so there is no one-size-fits-all treatment strategy, phased by time of illness.

It is, however, better If you can nip things in the bud before a cascade of secondary and tertiary effects develops and complicates matters, making it more difficult to find a way out.

I've attached two documents that I have found helpful in investigating my illness and finding treatment. They are both several years old, but have some good information. The one thing that's missing from both is things that impact the neck structurally to create pinched nerves, which lead to a wide variety of symptoms. I have been able to greatly improve By identifying discrete problems and getting treatment for them and know of other patients who have as well.

Thoroughly testing for viruses and immune dysfunction is critical. Many of us have chronic infections which lead to a host of other problems, and most doctors miss them because they do not test adequately. Supporting adrenal and thyroid function, as well as attention to other hormones is helpful as well. My doctor put me on hydrocortisone after doing a 24-hour saliva cortisol test, and it helped me to function while I solved other problems. Nutritional support is important too - eating a nutrient dense, high quality diet, as well as a good multivitamin, such as one by Thorne Research, is a good start, but finding a good functional medicine doctor or Bastyr-trained naturopathic doctor would be helpful as well.

Also, the concept of phasing is a good one. There are treatments I tried early on that were unsuccessful because my body wasn't ready for them, but then later on, they were very helpful. So, just because something doesn't work right out of the gate doesn't mean it's not a good intervention. That's why working with experienced and thoughtful doctor who can help you navigate and provide a phased approach would be helpful.

As far as doctors, there are few specialists and they are difficult to see. Finding a doctor near you who cares, and is willing to think outside of the box and navigate this with you would be the most helpful.

Thanks for this, I really appreciate it. I’ll have a deeper look later because my wife has told me I have to stop doing research/ trying to fix her for the rest of today and tomorrow because I need a break and it’s my birthday tomorrow. I don’t know how people with cfs do it, it can be all encompassing trying to understand this illness ( yes I work full time too, and do all the cleaning and cooking etc, but still have more energy after work than lots of people with cfs have in their whole day).

 

[Learner1]

Thanks for this, I really appreciate it. I’ll have a deeper look later because my wife has told me I have to stop doing research/ trying to fix her for the rest of today and tomorrow because I need a break and it’s my birthday tomorrow. I don’t know how people with cfs do it, it can be all encompassing trying to understand this illness ( yes I work full time too, and do all the cleaning and cooking etc, but still have more energy after work than lots of people with cfs have in their whole day).

Well, please do get some well deserved rest, and I hope you have a lovely birthday!

The reading will be there when you get back to it, and sometimes looking when you have fresh eyes and have tended to your needs first is best

 

[heapsreal]

… I had suggested in my opening post that I’d link to some of the other threads I’ve seen that have bits that could add to this… just edited that post to do so.

a few people in those threads have speculated there may be benefit in doing antivirals early while the virus, rather than an autoimmune response, is the key antagonist; or they have suggested that the more time goes by the more things get complicated or the disease gets embedded in all our systems.

The antivirals did help me alot but i didnt start them until id had cfsne for over 7 years. Twenty years this year for me and its been up and down with several occassions where ive been and 8 or 9 out of 10 for months to a couple of years. Always a backslide when ive stopped antivirals for several different reasons.

Ive always wondered if id jumped on antivirals after 6 months if id be in a different situation🤔
But ive also had improvements on antibiotics but know idea if a bacterial(lyme or other) infection was the primary issue that lowered immune function and then got viral infections or if bacterial infections are secondary.

At a guess, originally some sort of underlying immune dysfunction that doesnt expose itself until certain things align. The infections implicated in cfsme many others get and recover but for us .....

 

[Husband of]

The distinction between post-viral fatigue syndrome (PVFS) and ME has never been clearly delineated.

The best we know is that PVFS is probably just a short-term version of ME that lasts 6-18 months.

Hope this helps.

Yes what Pyrrhus said. My doctor was adamant it was 6 months and if it went on longer and medical history indicated possible ME like problems as mine did. Then you start a diagnosis of exclusion. This is why ME is a bit of a waste bucket diagnosis because it's diagnosed by exclusion. So for me I didn't get diagnosed until I'd had PVFS twice over a ten year period. So who's to say I didn't already have ME by age 20 for example.

Replying to these from conversation in another thread about recovering by resting. Putting them here because I’m interested, is there a point after which rest is no longer a sufficient strategy? Is there a point where something has changed to make the illness chronic rather than just a bit drawn out? If so, what changes define that point? I sort of wonder if the immune system putters out. And then you start picking up more viruses (or herpesviruses become reactivated f that wasn’t already the case), parasites, have bacterial issues, develop autoimmune issues, develop antibodies to interferon, etc.

The antivirals did help me alot but i didnt start them until id had cfsne for over 7 years. Twenty years this year for me and its been up and down with several occassions where ive been and 8 or 9 out of 10 for months to a couple of years. Always a backslide when ive stopped antivirals for several different reasons.

Ive always wondered if id jumped on antivirals after 6 months if id be in a different situation🤔
But ive also had improvements on antibiotics but know idea if a bacterial(lyme or other) infection was the primary issue that lowered immune function and then got viral infections or if bacterial infections are secondary.

At a guess, originally some sort of underlying immune dysfunction that doesnt expose itself until certain things align. The infections implicated in cfsme many others get and recover but for us .....

How did you go about convincing a doc to give you antivirals? I’m struggling a bit with this concept of taking it all into your own hands, as people on here seem to do, I just don’t see how I could convince a doctor to listen to me. The dr already tested for a few viruses, although when I got my wife to ask if she tested for hhv6 she said no. And I don’t actually know the results, although she initially said ebv was reactivated and then later said it was long covid (even though there was no reported covid in the community). I guess we could ask for more tests. There’s not even a single specialist in NZ that she could call . There was Rosamund vallings but she retired and I don’t think she prescribed antivirals anyway.

 

[godlovesatrier]

Replying to these from conversation in another thread about recovering by resting. Putting them here because I’m interested, is there a point after which rest is no longer a sufficient strategy? Is there a point where something has changed to make the illness chronic rather than just a bit drawn out? If so, what changes define that point? I sort of wonder if the immune system putters out. And then you start picking up more viruses (or herpesviruses become reactivated f that wasn’t already the case), parasites, have bacterial issues, develop autoimmune issues, develop antibodies to interferon, etc.

Will do my best to help.

In my opinion rest and aggressive pacing will slow the viruses from causing more damage, based on the experiences and stories of people who paced aggressively you could say it stopped them declining for decades, but this may not always be true. As you can see it's a complex topic. Trying not to make any generalisations as I don't want to lead you astray. But I get your question, is there a point at which PVFS ends and that's it, you can resume normal.

Well if we use the 6 month analogy then in my own personal experience having had PVFS twice, once was due to some weird form of exhaustion, the second was due to a very low white blood cell count. I gradually recovered over the 6 months. That is I was able to resume normal activities gradually over that time. 6 months is a ball park by the way, it could take a year for the immune system to resume its normal. There's no way to clinically define this unless you're seeing abnormalities in your wifes blood work, such as very low white blood cell count, b12 defiency or something that might indicate an underlying reason.

Mostly our blood tests are fine and we never really see much in them. I say fine, there ARE abnormalities, but clinically speaking there often dismissed. We suffer from lower NK cell numbers for example, which often means our lymphocyte count is lower (https://me-pedia.org/wiki/Natural_killer_cell // https://me-pedia.org/wiki/Natural_killer_cell#ME.2FCFS). We can suffer from prolonged or periodic neutropenia (neutrophils less than 1000 or 1 in the UK.).
https://forums.phoenixrising.me/threads/declining-neutrophils.75238/
https://forums.phoenixrising.me/threads/low-neutrophils.8496/
(I am also waxing and waning with regard to neutropenia and my doctors don't know what it is caused by, I think it's immune activation but cannot be certain).

Ruling that out, I'd say you're more likely to be in "mystery illness possible ME...could be something else" territory. Which is a horrible place to be.

You are probably aware of this already but hhv-6, ebv and many other viruses already exist in the body from birth or adolescence, so they are already there...something changes to make them become problematic. As the German scientist Bhupesh Prusty proved hhv-6 only needs to replicate at very low levels to cause problems with mitochondrial fragmentation (energy cell explosion). But yes it makes sense that some patients will pickup more viruses. https://www.eurekalert.org/news-releases/731247

Also another confounding factor, many patients report not having been sick for years or decades. Doctors say this is usually a bad sign and if a patient starts getting colds again (after a treatment) it's actually a sign their immune system has begun to work again. Maybe the reason I am milder than many is because I simply get sick all the damn time (or most of the time these days).

So maybe they don't always pickup new viruses?

******

If you've not already read Hip's roadmap for treating CFS it's an excellent little compendium. Also you've got https://me-pedia.org/ which you may also find very useful. Sorry I can't be more help, it's an extremely complex illness made up of dozens of subsets with very little overall understanding of why some people (us) get the illness, where 98% of the worlds population do not (this number may be wrong but the cdc last year asserted it was still around 2%).

CFS roadmap: https://mecfsroadmap.altervista.org/

 

[Andryr]

As lead author Prof Mady Hornig, director of translational research at the Center for Infection, points out, ME/CFS patients seem to be flush with cytokines until around the 3-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop.

1) Does anyone know which exact cytokines was he talking about? Interleukins, TNF?
(there is info in the report)
2) Does it mean CFS markers for those sick upto 3 years have been found?

 

[Pyrrhus]

is there a point after which rest is no longer a sufficient strategy? Is there a point where something has changed to make the illness chronic rather than just a bit drawn out? If so, what changes define that point?

Great questions. Unfortunately, I doubt anyone has great answers at this point...

There was Rosamund vallings but she retired and I don’t think she prescribed antivirals anyway.

You could try asking Ros Vallings for a doctor recommendation. She might know of a good doctor.

1) Does anyone know which exact cytokines was he talking about? Interleukins, TNF? (there is info in the report)
2) Does it mean CFS markers for those sick upto 3 years have been found?

The study that they are referring to is:

Distinct plasma immune signatures in ME/CFS are present early in the course of illness (Hornig et al., 2015)
Article: https://forums.phoenixrising.me/thr...ytokine-study-attracts-media-headlines.36012/
Discussion: https://forums.phoenixrising.me/thr...tudy-out-now-press-release.35880/#post-564988

Although this study attracted media headlines, it was never followed up on or replicated, as far as I know.
Since cytokine studies in ME have generated inconsistent findings, it would therefore be wise to interpret the findings with a grain of salt.

 

[Husband of]

Will do my best to help.

In my opinion rest and aggressive pacing will slow the viruses from causing more damage, based on the experiences and stories of people who paced aggressively you could say it stopped them declining for decades, but this may not always be true. As you can see it's a complex topic. Trying not to make any generalisations as I don't want to lead you astray. But I get your question, is there a point at which PVFS ends and that's it, you can resume normal.

Well if we use the 6 month analogy then in my own personal experience having had PVFS twice, once was due to some weird form of exhaustion, the second was due to a very low white blood cell count. I gradually recovered over the 6 months. That is I was able to resume normal activities gradually over that time. 6 months is a ball park by the way, it could take a year for the immune system to resume its normal. There's no way to clinically define this unless you're seeing abnormalities in your wifes blood work, such as very low white blood cell count, b12 defiency or something that might indicate an underlying reason.

Mostly our blood tests are fine and we never really see much in them. I say fine, there ARE abnormalities, but clinically speaking there often dismissed. We suffer from lower NK cell numbers for example, which often means our lymphocyte count is lower (https://me-pedia.org/wiki/Natural_killer_cell // https://me-pedia.org/wiki/Natural_killer_cell#ME.2FCFS). We can suffer from prolonged or periodic neutropenia (neutrophils less than 1000 or 1 in the UK.).
https://forums.phoenixrising.me/threads/declining-neutrophils.75238/
https://forums.phoenixrising.me/threads/low-neutrophils.8496/
(I am also waxing and waning with regard to neutropenia and my doctors don't know what it is caused by, I think it's immune activation but cannot be certain).

Ruling that out, I'd say you're more likely to be in "mystery illness possible ME...could be something else" territory. Which is a horrible place to be.

You are probably aware of this already but hhv-6, ebv and many other viruses already exist in the body from birth or adolescence, so they are already there...something changes to make them become problematic. As the German scientist Bhupesh Prusty proved hhv-6 only needs to replicate at very low levels to cause problems with mitochondrial fragmentation (energy cell explosion). But yes it makes sense that some patients will pickup more viruses. https://www.eurekalert.org/news-releases/731247

Also another confounding factor, many patients report not having been sick for years or decades. Doctors say this is usually a bad sign and if a patient starts getting colds again (after a treatment) it's actually a sign their immune system has begun to work again. Maybe the reason I am milder than many is because I simply get sick all the damn time (or most of the time these days).

So maybe they don't always pickup new viruses?

******

If you've not already read Hip's roadmap for treating CFS it's an excellent little compendium. Also you've got https://me-pedia.org/ which you may also find very useful. Sorry I can't be more help, it's an extremely complex illness made up of dozens of subsets with very little overall understanding of why some people (us) get the illness, where 98% of the worlds population do not (this number may be wrong but the cdc last year asserted it was still around 2%).

CFS roadmap: https://mecfsroadmap.altervista.org/

Thanks, that’s helpful. My wife has definitely not been getting better, so I guess she’s probably in this forever.. Most of her symptoms are the same as on day 1 (which, if there was a virus, was presumably the effect of the virus). On day 1 she got immediate pem from activity. Now she definitely also gets delayed pem, but she might have been getting that at the start without me realising because I wasn’t looking for it. But she didn’t have pain symptoms, and the longer it goes on the worse these get. And at the start she had constant low grade fever, for about 6 weeks.

1) Does anyone know which exact cytokines was he talking about? Interleukins, TNF?
(there is info in the report)
2) Does it mean CFS markers for those sick upto 3 years have been found?

My understanding is They just compared those who had been sick for three years or less to this who had been sick for more than three years, testing for statistical significance in the difference between these populations compared to controls. In other words, you can just say the populations are different on average. So you can’t say it’s a biomarker for three years, it could be a different amount of years for different people, or it could only apply to some people. More importantly, it’s possibly a marker to say that your immune system is still hyperactive, and hasn’t exhausted itself yet. This may make a difference in terms of what treatments might work, although I don’t know how.