Possible CFS success story. Got much better after 4-5 years. Here's what has helped.

[Valentijn]

These lows can be described as having to lie down 5-10 times a day for 5-30 minutes (I can't take naps during the day, because I won't fall asleep at night then.). Sitting would be very difficult, but I would force myself to sit at the computer to research CFS for a total of couple of hours a day minimum. It was extremely difficult to concentrate due to exhaustion and brain fog, but I would read in short intervals and rest in between. The worst period lasted for maybe a year.

This sounds like it could be entirely explained by Orthostatic Intolerance. Exercise often helps with OI in patients who do not also have ME, by building up muscles and/or getting blood circulating better while moving.

 

[Hip]

On the other hand we have a distinctive symptom in the form of PEM (ICC, CCC, SEID), which identifies patients with a common meaningful symptom which can be objectively verified via CPET.

As far as I can see — and perhaps you can double-check this yourself — I don't think it is correct to say that physical exertion-induced PEM is a compulsory symptom that patients must have before they are diagnosed with ME/CFS under the CCC, ICC and SEID criteria.

PEM is certainly a compulsory symptom in the CCC, ICC and SEID, but it seems that under these ME/CFS definitions, if you get PEM from either physical OR mental exertion (or both), then that is enough to satisfy the criterion for having PEM (see the extracts below copied from the CCC, ICC and SEID criteria).

So if you just have PEM induced by mental exertion (ie, cognitive fatiguability), but no PEM induced by physical exertion, then that still counts as PEM.

Thus under the CCC, ICC and SEID criteria, even if you can go jogging for miles without repercussions, you could still have ME/CFS.

This means that the notion that the 2-day CPET could be a diagnostic tool that captures all ME/CFS patients defined by the CCC, ICC and SEID criteria is probably not really correct. Certainly the CPET would be a great help in diagnosis, but it will not capture all CCC, ICC and SEID-defined ME/CFS patients.



Here are the text extracts from the CCC, ICC and SEID which relate to PEM:

The CCC actually seems a bit ambiguous as to whether it requires both physical AND mental-exertion induced PEM, or whether just physical OR mental exertion-induced PEM is enough. On the one hand, the CCC says:

Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical AND mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period usually 24 hours or longer.

But elsewhere in the CCC document it says:

Physical OR mental exertion often causes debilitating malaise and/or fatigue, generalized pain, deterioration of cognitive functions, and worsening of other symptoms that may occur immediately after activity or be delayed.

Under the ICC, if you get PEM (PENE) from physical OR mental exertion, then you satisfy the criteria for having PEM (although the ICC is also slightly ambiguous as it also says: "Low threshold of physical AND mental fatigability").

Post-Exertional Neuroimmune Exhaustion (PENE) — Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are:

1. Marked, rapid physical AND/OR cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Under the SEID criteria it is clear that you can have PEM from either physical OR mental exertion, and satisfy the criteria for having PEM:

Post-exertional malaise (PEM)
PEM is worsening of a patient’s symptoms and function after exposure to physical OR cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.

In summary: if you can run a marathon without getting PEM, you can still have ME/CFS as defined by the CCC, ICC and SEID criteria (although the CCC and ICC are a little ambiguous about this).

 

[Woolie]

As ever, I have to use my own 'energy credits' for more-essential, conventional activity like shopping, cooking, washing-up, gardening and the occasional bit of housework. I have visions of people with ME who can do exercise for the sake of it being waited on by a butler...or a Mum?

Yea, @MeSci. Wish I could afford to spend my allocation - on days I have one - going for a nice gentle walk, instead of cooking dinner for my kids, shopping, cleaning, etc.

 

[Woolie]

I am very unstable I go from bed ridden 3% of 10 to working and about normal quit a lot (8% of 10). I have had 3 remissions. I crash everytime due to overdoing the exercise (when I go to weights or heavy cardio). I know better now and this time was harder to get out of bed. But I am about 70%-80% most days

@Inester7, that's what my condition was like for the first 12-15 years. Very fluctuating. So in the "up" periods, I could exercise pretty freely without repercussions, but in the "down" periods, I was completely bedbound, and lifting my arm was a challenge. Its all flattened out a lot now, the "up" periods are not so up, and I have to be careful what I do all the time.

So yea, with an extreme relapsing-remittng pattern, the deal is different.

Just curious: I have always had a lot of "immune" symptoms, they seem to be more prominent than for others here - sore throat, painful glands, etc. Do you have that too @Inester7?

 

[jimells]

concerns about the generalisiability of the advice.

That really is a key point, with all of the suggested tests, treatments, supplements, etc. that sprawl across the forum - we have only vague ideas about who might benefit and who might be harmed. Add to that all the unintentional misinformation and untested theories, and it gets very difficult to sift the wheat from the chaff.

 

[jimells]

@Inester7, that's what my condition was like for the first 12-15 years. Very fluctuating. So in the "up" periods, I could exercise pretty freely without repercussions, but in the "down" periods, I was completely bedbound, and lifting my arm was a challenge. Its all flattened out a lot now, the "up" periods are not so up, and I have to be careful what I do all the time.

So yea, with an extreme relapsing-remittng pattern, the deal is different.

This was my pattern for quite a few years. Each partial remission was followed by a relapse to a lower level of functionality. Now I am mostly couch bound, and I don't expect any more partial remissions without a real treatment. (Go Dr Fluge!! Go Dr Mella!!)

 

[Seven7]

[QUOTE="Woolie, post: 685442, member Do you have that too @Inester7?[/QUOTE]

I agree long term I don't know where I will be. I am a new case kinda 8 years or 9.

I do an extra effort to supply my body w all nutrition and vitamins so I don't deteriorate so that is the long term plan.

Yes I get fluish but I have learnt what causes it and what to do about it.

When my immune system is firing and gets hyper I get extra signaling and I know the feeling of imflamatories cytokines ( I know becuAse I have been tested while having this feeling a few times vs when not and I can tell the difference. I get an over signaling in brain and I am unable to sleep, the brain is very noisy and particular feeling.
When that happens
1) if I am fighting something I can tell becuAse the lymphs hurt. I avoid imflamatories foods and take some antimflamatories OTC.
2) sometimes I try new food and it flips me like equinecea tea, something with added zinc or anything that is a inmune booster will give me the fluish feeling. I stop all suplements and prescription let my system calm down and wait it out. Ussually will go fast. If that doesn't work then I try to up my inmune mods and that does the trick.
3) when it is a crash I rest and pay extra attention to nutrition try to have bone broth which I swear cures everything . I sleep extra and so on.

 

[Woolie]

Thanks for sharing, @Inester7, useful advice!

 

[EtherSpin]

@arty0mk -

ME/CFS is defined by a pathological reaction to exertion. Exercise does not help us.

I tend to agree as a general rule, but if this definition was accepted then would we be having any of these issues with government bodies deriving policy from the findings of the PACE trial for example? there are many attempts at defining ME/CFS and some of the more toxic notions about it are extremely common. notions about the role of exercise vary greatly between self proclaimed specialists in treating the problem ( they've argued black and blue with me that I allowed myself to decondition when I stopped other leisure in order to *fitness* my way out of developing CFS )
I asked Arty to please post here as I figured that if he has CFS by even one of the more commonly known sets of criteria for the condition then his recovery story definitely belongs here no matter what we may find in future to rule out other similar conditions or label subsets. if he had something that even 5% of doctors would label CFS and his protocol reversed the problem at all then it could be life saving for more than a handful of people on here with the same problem, at least, i think so, but like most of us, my brain is buggered so I am open to you explaining why I am way off the mark if I indeed am
if we get famous studies that used the oxford criteria comprehensively discredited and retracted maybe the story will be different but I don't think there can be such a huge difference in public perception and public medical approach to CFS from the internal approach to it on this forum - people will come here looking for help based on having what the public would deem CFS.

 

[lookinglass]

If you read the post, he says he doesn't know if he has CFS because he has never been diagnosed. I am only saying what he said, not inventing something.

"I should start off by saying that I was never officially diagnosed with CFS because I had a negative experience with my doctor."

He improved, good. But he nor anyone has any idea it is from CFS and that is what I object too. I could say "I cured myself of MS bey eating Rat poo. I don't know if I have MS but I looked on the internet and I have some of the symptoms" so I must have it.

Saying in the title he has CFS is very misleading. Again that is my objection.

We ALL know that one size doesn't fit all. We ALL know that we suffer in varying degrees and stages. We ALL know that medicine has let us down, badly with few exceptions thank God. I for one am grateful for his lengthy and interesting and hopeful input. We also know that some of us have been misdiagnosed by inadequate practitioners. They too exist to add confusion to the mix.

 

[Mij]

I'm hoping this forum won't become bombarded with supplement and mineral imbalance "success stories". There is enough of that all over the web.

 

[lookinglass]

This argument happens when-ever someone new comes to the forum with a cure story. We go through all the same arguments every time.

Not every one is here seeking "hope" and even if they are your argument isn't going to make everyone in that boat happy. We may be here for "hope" but that doesn't mean we won't be looking at claims made, asking questions and evaluating the evidence in an intelligent and thoughtful way.

I can't see anyone being negative or "bawling him out". We react differently on this forum to cure stories. Not everyone thinks that same or agrees on how these should be handled but unless specific posters break the rules of this forum then evaluations are allowed. If you think that a poster is breaking forum rules then contact a moderator. Until then the discussion can continue without censorship.

With respect I think you missed my point UKXMRV. ArtyOMK qualified his title with the word 'Possible' CFS....

 

[ukxmrv]

With respect I think you missed my point UKXMRV.

Sorry Lookinglass. Bad day. I'll try and take another look later on. If you feel up to posting again please do.

 

[lookinglass]

Sorry Lookinglass. Bad day. I'll try and take another look later on. If you feel up to posting again please do.

Sorry Lookinglass. Bad day. I'll try and take another look later on. If you feel up to posting again please do.

That's OK. Bad day I understand. here 's a hug.

 

[Valentijn]

With respect I think you missed my point UKXMRV. ArtyOMK qualified his title with the word 'Possible' CFS....And the poster Minkeygirl that criticised him for putting 'CFS into the title' was IMO simply being picky and provocative, by repeating that one point more than once.

If you went to a lung cancer forum, having recovered from your idiopathic breathing problems, and started a thread entitled "Possible Lung Cancer Success Story", you would face widespread objections, and probably much harsher than any seen here.

I'm sick of people saying that we should swallow their success stories as being relevant simply because we can't prove that they don't have ME/CFS, even when they don't have the symptoms that are distinct in ME/CFS. People do not have a right to insist that I should give credence to cures which help Oxford patients simply because a bunch of pompous asses with a lot of credentials decided to create a criteria which is nothing more than fatigue, and applied it to my disease.

Having "fatigue" in the name of our illness is not an invitation to inundate us with absurd cures. We are not resenting the intrepid self-healers, or rejecting them because they are not as sick as us. We are not discriminating against them because we reject whatever helped them. We are using our brains to intelligently deduce that their stories are completely irrelevant.

Foods, diets, supplements, sleep protocols, methylation, exercise, positive thinking, etc do not cure complex disease. Sometimes I really do wish I had a nice case of cancer just so I could label quackery and self-delusion for what it is, without being accused of hurting someone's feelings. If you're going to make extraordinary scientific claims (such the novel cure of incurable disease afflicting millions of people), man the hell up and prepare for scientific scrutiny.

 

[MeSci]

Foods, diets, supplements, sleep protocols, methylation, exercise, positive thinking, etc do not cure complex disease.

I don't think that we can say that with certainty. I also think that drugs are often very overrated, and often promise much more than they deliver.

Following a carefully-organised change in diet and addition of supplements, I experienced remissions and reductions in several health problems, including some which had plagued me for decades and resisted doctors' attempts to alleviate. It seems reasonable to assume that it was one or more or all of the dietary changes and/or supplements that brought these improvements about.

 

[Mij]

The title contradicts what he wrote:

"My CFS is probably described as a mild case."

"What I think has triggered CFS was me being raw vegan for 4 years and possibly over-training"

 

[MeSci]

The title contradicts what he wrote:

"My CFS is probably described as a mild case."

"What I think has triggered CFS was me being raw vegan for 4 years and possibly over-training"

No one really knows what causes ME. It has been proposed that there may be several different kinds with different causes. See for example these two threads:

http://forums.phoenixrising.me/index.php?threads/do-mes-cause-cfs.31930/

http://forums.phoenixrising.me/inde...-for-radical-change-in-me-cfs-research.24763/

@arty0mk indicates that he was unaware of overtraining syndrome being possibly a different illness in this post.

 

[Gingergrrl]

Foods, diets, supplements, sleep protocols, methylation, exercise, positive thinking, etc do not cure complex disease.

I also have to disagree and food, diet and supplements (including glutathione and eating oats/apple pectin mixture to detox mold) were at the literal core of what turned around my MCAS. Last May I was in the hospital down to 98 lbs and could tolerate only water and doctors were discussing putting me on a feeding tube and I had days I thought I was going to die from anaphylaxis.

By following a very low histamine diet plus supplements since May, I have now gotten off of all prescribed daily MCAS meds with the exception of one (Ketotefin) and am tapering off Cortef- all others are supplements. I can now eat about 100+ foods, last night I actually ate dark chocolate for the first time in nine months with no reaction, and this weekend I will attempt to eat in a restaurant for the first time in nine months.

MCAS is a very complex disease that few doctors even know about. While I am still very ill b/c of my pulmonary/breathing/autonomic issues, my MCAS has improved beyond my wildest dreams. If I post this full story some day and use MCAS in the title, I hope not to be attacked as I would only be talking about what helped me personally.

Sometimes I really do wish I had a nice case of cancer

These comments also feel bad to me b/c my husband's first wife (the mother of my step-daughter) died of a rare form of cancer at age 39 when my step-daughter was only two years old. I have raised her since age nine (she is now 14) and there is no such thing as a "nice case of cancer."

 

[Valentijn]

I also have to disagree and food, diet and supplements (including glutathione and eating oats/apple pectin mixture to detox mold) were at the literal core of what turned around my MCAS.

MCAS is not ME/CFS, nor even a common symptom of it. And I do agree that supplements can be helpful for certain symptoms, but they certainly do not cause recovery or near-recovery of ME/CFS.