End game?

[Gingergrrl]

Yes. Did two infusions in late March and early April with two more scheduled in Sep/Oct. No real changes yet.

I think we discussed Ritux in a prior thread (and don't want to take this off track) but were you the one who was taking it as part of an attempt to taper off of steroids or am I still confusing you with someone else? If so, has it helped at all with your steroid taper? Your dosing schedule is also very different than mine (but I know there are many different ways to do Ritux). My initial two infusions were two weeks apart (day 0 and day 14) but after that, they are every three months.

 

[Desertstorm]

I think we discussed Ritux in a prior thread (and don't want to take this off track) but were you the one who was taking it as part of an attempt to taper off of steroids or am I still confusing you with someone else? If so, has it helped at all with your steroid taper? Your dosing schedule is also very different than mine (but I know there are many different ways to do Ritux). My initial two infusions were two weeks apart (day 0 and day 14) but after that, they are every three months.

Yes, I have been on steroids for years to control autoimmune caused inflammation of my organs. I am tapering down now to see if the reduction in B cells is helping or not. Currently I am down by 40% and waiting to see if the skin, pulmonary and kidney issues return or not.

 

[Desertstorm]

Did you try an association between T3 + prednisolone?

I got worse and worse for 35 years, and I am fine since I started this.
Low T3 state/syndrome worsens with aging, so if you have thyroid resistance, or central hypothyroidism, aging will have a negative impact.

Yes, that was one of things we looked for at Mayo and locally.

Corticosteroids are a double edged sword certainly, but all my symptoms predated any steroids. The first thing docs suspected recently were medication induced issues.

 

[Desertstorm]

Fatigue is the single most common symptom. Its not very important to focus on it because it tells you very little by itself. Its also typically not disabling. Its the other things that are associated with fatigue that are disabling, and confusion over terminology and explaining things has a big part to play in this. What is worse, chronic fatigue is not, despite claims, universally present in ME patients. Fatigability, and symptom exacerbation from activity, are more central to the issue. Its not exercise intolerance either, though I think we have that too. Its about the underlying pathology getting worse after activity, in what patients describe as a bad crash, or PEM. We are finally figuring out tests to measure this. Biomarkers can change our understanding profoundly.

I can't imagine that fatigue is not the most debilitating part of all this for most folks. It sure is for me. PEM is very real in my case.

I am also interested in your view that ME and CFS are not the same syndrome. Most of the science I read has them as the same condition.

 

[Gingergrrl]

Yes, I have been on steroids for years to control autoimmune caused inflammation of my organs. I am tapering down now to see if the reduction in B cells is helping or not. Currently I am down by 40% and waiting to see if the skin, pulmonary and kidney issues return or not.

That is great that you are down by 40% on the steroids and I am wondering if it is due to the Rituximab (obviously I don't know)! That would be amazing if your skin, pulmonary & kidney issues did not return and I hope you will keep us posted.

 

[alex3619]

I can't imagine that fatigue is not the most debilitating part of all this for most folks. It sure is for me. PEM is very real in my case.

I am also interested in your view that ME and CFS are not the same syndrome. Most of the science I read has them as the same condition.

Fatigue and energy insufficiency are not the same. What we have is energy insufficiency, and a ceiling on energy production that is very low in some cases. So on demand ... there is not much more energy we can make, and we switch to rely on glycolysis.

When we use the term fatigue we conflate it with all the other types and definitions of fatigue. Everyone gets fatigue, ergo we just have to push through it.

Mild, well managed patients might not experience chronic fatigue. Many ME patients do not experience chronic fatigue. Byron Hyde has seen many patients with no chronic fatigue, but with all the other things. I have experienced it myself, and it was a surprise ... but it was not remission, I still could not function and even could get PEM.

I am not sure I would claim that CFS and ME are not the same syndrome, at least in all cases. I will most definitely claim that the patient cohorts selected under various definitions are different. Look at numbers alone ... prevalence of 0.2% under strict ME, prevalence cited as high as 7% under very weak CFS definitions. That's a huge gap, and allows for potentially huge selection bias.

So right now we can probably treat them as similar if not the same at a clinical level, but we cannot be sure about the full patient range, and that will change. Fukuda, for example, does not require PEM but it is an optional symptom. Oxford, as the worst definition, does not require any symptom other than chronic fatigue, though with caveats. Most weak definitions seem to point to about 2%, but strong definitions are 0.4% or under. When you have such large differences you are almost sure to have selection biases.

PEM is much more specific, but we still lack good operationalisation, largely because we do not use any objective measures in most studies. There are now multiple tests still being investigated, PEM might be associated with energy deficits, cytokines and other blood markers. This does need more research. When we start using those we might be more able to get good cohorts or better measure clinical outcomes.

Now in MS they have exercise intolerance, but a study using CPET showed their response is very different to ME. Its exercise intolerance, not PEM.

For most, for now, any clinical presentation is about treating symptoms, and its very individual, so it does not matter hugely, from that perspective, how you define it. For management considerations, including activity planning, it might make a difference though. With exercise it makes a huge difference if the person does not have PEM. Current cutting edge research is looking at flexibility and strength training with no aerobic component, as aerobic metabolism in ME is very broken.

 

[Desertstorm]

When I use the term fatigue it is obviously in reference to chronic fatigue as we all here experience.

Pushing through it? That is what uninformed doctors tell us is it not? When our cells are not producing enough energy to function it is the body saying slow it down, not to continue. Fatigue is our circuit breaker.

 

[Dufresne]

GWI or GWS as it was called is probably caused by multiple concurrent exposures to a variety of toxins and chemicals but as with CFS as stand alone condition...who knows. The primary conditions mirror CFS but with rashes, nasty autoimmune symptoms etc. At least now it recognised as a real syndrome, and it was first described and studied in 1994. Most of us (200K worldwide) were deployed between 1990 and 1992 when we became sick. Mostly after GI viruses.

We really need to combine the research efforts and knowledge as people like Dr Klimas has.

I saw Dr Klimas participate in a Q&A last Thursday in Montreal. I like her approach. I find researchers who actually see a good number of patients tend to have the best strategies. She mentioned the forty million going to GWS and spoke about the shared benefits of the research for both illnesses. Also, I think she said 800 000 people were deployed to the Middle East and 300 000 became ill. I thought this a shocking number. I had no idea it was that high. But then again the number they were throwing around that night with regard to Canadians with ME/CFS was 500 000, which is ridiculous; I think inflating the numbers to that extent does more harm than good when we're talking about "Chronic Fatigue Syndrome."

So most with GWS had their illnesses triggered by GI bugs? Would this have happened some time after returning home? Does this suggest the cause of the disease was a sort of one-two punch: a toxic set-up followed by an immune disturbance?

 

[alex3619]

chronic fatigue as we all here experience.

My point is that not all of us experience this. Fatigue, yes, extreme fatigue, yes, chronic fatigue, no. Its a very common symptom but its not universal. It probably is universal in very severe patients though. I also suspect most who do not have it are at the mild severity, pacing well, and under good medical care, possibly with effective treatments for them. With zero chronic fatigue they are not recovered though, and still have limited function. If they were to continually over-exert, such as in a push-crash cycle, then they would probably have chronic fatigue as well. Fatigue is in my current view a secondary and not mandatory symptom. Its also not necessarily debilitating. Its the things closely associated with fatigue, and more universal, that are debilitating. Doctors, and most of us who have been taught to call it fatigue, conflate the issues. We have the CDC to thank for that, by promoting fatigue as the primary symptom, and ignoring the history of ME.

Now chronic fatigue is definitely a symptom in the primary symptom complex, under SEID for example. However the emphasis is PEM, not chronic fatigue.

What would be interesting is if we can find good biomarkers for PEM and ME, then find that PEM is not universal either. That would change perspectives. Right now PEM, or post exertional symptom exacerbation, and/or fatigability seem to be the universal findings.

 

[Mary]

If anyone has insight into how CFS progresses as we reach our "golden years"? My guess is that at 61 now I can expect the fatigue, memory issues, POTS and the rest will accelerate and become terminal at some point.

I'm in my 60's. I've had ME/CFS for 20 years and am actually better than when I first got sick, and better than even 5 years ago, primarily due to various supplements I take. I've done a lot of reading and have used myself as a guinea pig extensively. I've done a ton of detoxing as well, which has helped a lot (this was a bit complex - if anyone wants more info, I'll provide it). None of this was easy. Also, I experienced symptoms of refeeding syndrome on a few occasions when introducing a new supplement and that had to be dealt with as well. It wasn't simple, but it has been worth it.

Eleven years ago I had 1 or 2 "good" days a month where I wasn't crashed or sick or detoxing or herxing, though on those "good" days I was very limited in my activities (3 - 4 hours of light activity with rest breaks) in order to avoid PEM the next day and it would take me 3 - 4 days to recover from PEM. Now I often have 3 (and once in awhile 4) "good" days a week, and my PEM recovery time has been reduced to 1 - 2 days.

So I don't accept that it's necessarily a downward progression with ME/CFS. And I'm faintly hopeful there may be real treatment before I get to my 70's

 

[Desertstorm]

So most with GWS had their illnesses triggered by GI bugs? Would this have happened some time after returning home? Does this suggest the cause of the disease was a sort of one-two punch: a toxic set-up followed by an immune disturbance?

GI viruses are very often a common thread in GWI patients. Most of these viruses hit us early in a tour followed by or preceded by taking pyridostigmine-bromide pills as an anti nerve agent. We also were exposed to high levels of insecticides, oil fumes, traces of sarin gas and nerve agents both from SCUD missile explosions and as the result of blowing up chemical weapons depots in Iraq. The theory is that a combination of exposures which exacerbate each others effects on the body is root cause of the autoimmune conditions and other cellular level damage that causes us so many problems concurrently.

This is why it is so important to understand the root causes of CFS and GWI which will hopefully lead to definitive DXing and thus lead us to a cure or mitigation.

 

[JinZ]

I'm in my 60's. I've had ME/CFS for 20 years and am actually better than when I first got sick, and better than even 5 years ago, primarily due to various supplements I take. I've done a lot of reading and have used myself as a guinea pig extensively. I've done a ton of detoxing as well, which has helped a lot (this was a bit complex - if anyone wants more info, I'll provide it). None of this was easy. Also, I experienced symptoms of refeeding syndrome on a few occasions when introducing a new supplement and that had to be dealt with as well. It wasn't simple, but it has been worth it.

Eleven years ago I had 1 or 2 "good" days a month where I wasn't crashed or sick or detoxing or herxing, though on those "good" days I was very limited in my activities (3 - 4 hours of light activity with rest breaks) in order to avoid PEM the next day and it would take me 3 - 4 days to recover from PEM. Now I often have 3 (and once in awhile 4) "good" days a week, and my PEM recovery time has been reduced to 1 - 2 days.

So I don't accept that it's necessarily a downward progression with ME/CFS. And I'm faintly hopeful there may be real treatment before I get to my 70's

Before i'm 30