Most effective treatments spreadsheet

[heapsreal]

triffid113, i think we have a few issues going on at once, adrenal fatigue where we have poor cortisol and dhea levels can be apart of the problem and treating it can definately help but doesnt seem to be the cure but definately go after it. DHEA has many functions, one that may help cfs/me people is that it lowers interleukin6 and inflammatory cytokine which can cause havoc in us, especially sleep problems. I also think with adrenal hormones we have to start with very low doses and increase slowly as we can get overhyped up by them and feel awful. I would dodge cortisol until its a last resort and maybe look into pregnenolone in very low doses like 5mg to start with.

cheers!!!

 

[Valentijn]

I have PEM. Just because I don't know a trendy name for it, means nothing.

It is not my intention to suggest that there is a clear cut limit to how much people can do while still claiming to have PEM. But in the weight loss thread, you mention being extremely active - walking, jogging, and cycling, exercising for 45 minutes, and 25 mile bike rides. When you mention your limitations in these activities (not being able to ride 100 mile marathons any more, etc), you attribute your limitations to anemia and blood sugar.

I am not saying that your lack of PEM makes you less worthwhile than anyone else, but I do think it is important to avoid an incorrect self-diagnosis. If you do have ME/CFS, then these intense workouts could be dangerous and might be better off avoided in exchange for lower-impact activities spread out in smaller chunks. But if you don't have ME/CFS, then you'd be missing out on a lot of beneficial activities by limiting yourself in that way.

Similarly, advice you give to others should take those differences into account. When ME/CFS is equated with anemia and hypoglycemia, it is feasible that good advice for anemia and hypoglycemia would be harmful for people with ME/CFS. It's not a matter of one disease being more worthy than the others - it's just a practical matter of giving advice that is appropriate to the disease being discussed. And at an ME/CFS forum, the disease being discussed is ME/CFS.

I have seen your studies run by Rich and the people in your stsudies have the same genetic defects as me but only A THIRD of them.

Perhaps this is an indication that you have a different condition than the rest of us. I also find it a bit odd that you question the existence of ME/CFS as a distinct disease and deny that there is a test for diagnosing it, yet persist in believing you have it based solely on genetic markers. Most, if not all of us with ME/CFS, were once healthy, yet still had the same genes prior to being ill that we do now. But we didn't have ME/CFS then, despite potentially having a predisposition to developing it.

I also see that a lot of you may function at a 2, but a lot of u (apologies to the lot for whom this is not true becuz I get your fear and live with it myself), find that u r ok with that if u are on disability and have few responsibilities so u find life peaceful, and you snuggle in with your hubbies and bf's and you have people in your life to cuddle and share with who actually know all how broken u are and love u anyway.

I think this is an extremely insulting sentiment. NO ONE here wants to remain severely disabled, even when financial and emotional support is available. In many cases that support is not available, and people suffer grievously and do everything they can to try to recover. And when that support is available, life is still extremely unpleasant compared to what it was before. Most, if not all of us, have tried very many supplements, vitamins, hormones, drugs, etc, in an attempt to improve our situation.

I would trade my life for yours. I guarantee in 2 months I would take your life and be a 7 or 8 struggling, and you would be whatever u r now or worse because 18 genes r pretty hard to figure out (and Yasko doesn't know enough to do it yet).

This is again quite insulting to myself and others that are working very hard to improve ourselves.

Tania, i dont care what u say there is no doctor going to diagnose CFS when u have that. It's just not happening. And now, I am more likely to get diagnosed autistic, another label that doesn't help anything. What is the payback getting these labels? If u r going to file disability, I can see it. I can't do that. In order to do that I would, as I said, have to get a pacemake in only days. I would be totally broken and maybe could not recover.

It's not about seeking labels to get benefits. It's about getting a correct diagnosis so we can understand the problem we're having and seek appropriate help.

 

[Patrick*]

Underdog,

Thanks for doing this. While I had a very difficult time narrowing it down to only 2, I understand your reasons for limiting it. (in reality, I have about 6 top treatments that are very nearly tied, but I did my best to pick the two best). I revised my column of the spreadsheet to clarify a few things.

I wasn't quite sure how to fill out columns H (Worst 2 symptoms) and M (improvement in worst 2 symptoms). In H, I filled out my worst two symptoms NOW (after treatment), but those have changed over time. So in column M, I was referring to improvement in old symptoms. So there's a slight disconnect between my entries for columns H and M.

I hope you're able to get many, many more responses because I think this could be a very interesting and valuable document, especially if it gets more respondents.

PWCalvin

 

[Mark]

I've created a new copy of this thread with some of the off-topic posts removed, just to keep it tidy.

http://forums.phoenixrising.me/showthread.php?17368

Idea is to move the on-topic discussion there and if the off-topic posts above need to be kept or the discussion continued, that can continue here.

 

[biophile]

The following comment isn't directed towards triffid113, but Valentijn's response reminded me of something I've observed in real life and on the internet. Some people with CFS-like symptoms who are still functioning at relatively higher levels can be just as annoying and patronizing towards lower functioning patients as disbelieving non-patients. Most of them are probably still in the earlier stages of illness and others probably don't have ME/CFS.

It seems to happen when someone believes that because they have generally similar symptoms as another patient but remain more active by ignoring or pushing through baseline symptoms with minimal post-exertional consequences, then the less active patient must be somehow suffering from a psychological problem or behavioural deviance, one which the more active person would easily overcome if placed in the other patients' shoes. Another variation to the problem is the failure to acknowledge differences in the type of impairments between patients operating at a similar level of global functioning. We all have individuals strengths and degrees of impairments in various domains, and chances are we don't all even have the same illnesses anyway or at least the same pathology.

From my own experience, the main difference between higher functioning and lower functioning is not baseline "fatigue", it is more about worse post-exertional symptoms, reduced ability for the body to sustain the response needed to be more active, and other symptoms/complications of longterm illness as well as unwise treatments. Anyone who believes they could enter my brain/body and gradually train it to bike ride 25 regular miles or lift weights properly for several nights a week etc would be in for a serious world of hurt and be delivered a massive smackdown to their presumptions.

 

[heapsreal]

The following comment isn't directed towards triffid113, but Valentijn's response reminded me of something I've observed in real life and on the internet. Some people with CFS-like symptoms who are still functioning at relatively higher levels can be just as annoying and patronizing towards lower functioning patients as disbelieving non-patients. Most of them are probably still in the earlier stages of illness and others probably don't have ME/CFS.

It seems to happen when someone believes that because they have generally similar symptoms as another patient but remain more active by ignoring or pushing through baseline symptoms with minimal post-exertional consequences, then the less active patient must be somehow suffering from a psychological problem or behavioural deviance, one which the more active person would easily overcome if placed in the other patients' shoes. Another variation to the problem is the failure to acknowledge differences in the type of impairments between patients operating at a similar level of global functioning. We all have individuals strengths and degrees of impairments in various domains, and chances are we don't all even have the same illnesses anyway or at least the same pathology.

From my own experience, the main difference between higher functioning and lower functioning is not baseline "fatigue", it is more about worse post-exertional symptoms, reduced ability for the body to sustain the response needed to be more active, and other symptoms/complications of longterm illness as well as unwise treatments. Anyone who believes they could enter my brain/body and gradually train it to bike ride 25 regular miles or lift weights properly for several nights a week etc would be in for a serious world of hurt and be delivered a massive smackdown to their presumptions.

Agree, i think the lower functioning cfs/me people are probably in a constant state of PEM and any type of activity aggravattes their PEM. I think dr Lerner mentions that he doesnt encourage any type of exercise until a patient is functioning like an 7 or 8 out of 10? or else they will make themselves alot worse and cause damage to themselves. This is similar to my experience but i also dont think lerner thinks exercise will fix cfs but when at a stage that one can do exercise, it helps one to overcome a deconditioned state many of us are in from the sedentry life style cfs forces us in.

I think most of us who have cfs/me understand that we are all at a different level of the illness and we all react so differently to meds, supplements and activity. Many of us push ourselves too far accidentally or testing our boundaries. When i first read about cfs it mentioned the push crash cycle many get in and pacing ourselves and pre-emptive rest etc i think is a personal lesson many of us learn the hard way when we become ill with cfs/me. it took me a few years to work this out and still havent fine tuned it.

cheers!!!

 

[Calathea]

I also see that a lot of you may function at a 2, but a lot of u (apologies to the lot for whom this is not true becuz I get your fear and live with it myself), find that u r ok with that if u are on disability and have few responsibilities so u find life peaceful, and you snuggle in with your hubbies and bf's and you have people in your life to cuddle and share with who actually know all how broken u are and love u anyway...so both a peace from ills which I can never get as there is ALWAYS a NEW and SERIOUS one, and a peace with support form friends/family that I also have never known.

I too am horrified by this. First of all, how dare you call anyone "broken", and imply that we are lucky to be loved despite that? Secondly, just because people manage to keep going with their lives even when they're terrible does not mean that they are having a good life. Getting a few snuggles from a partner is perfectly nice in its way, but it does not make up for being appallingly disabled. Would you tell someone with terminal cancer that they were lucky and had a great life if they managed to eat and enjoy the odd piece of chocolate? And thirdly, people living on disability/welfare benefits are living in poverty, usually struggling to pay the bills and unable to afford the expensive ME treatments that are popular in this forum, except for a handful of supplements if they restrict their spending on anything else to a ridiculous degree. This is not something to be envied. Fourthly, have you seen all the posts about how isolated we all are, how we have lost friends, family and partners because of our illness, how some of us are or have been in abusive family or romantic relationships which our illness makes us more vulnerable to? You seem to think that we're living the good life, with plenty of money and social support. I don't know a single person with ME for whom that's true.

As for your spreadsheet, you are ignoring a whole lot of therapies that may help some people enormously because you are focusing in such a narrow way. Moving up the PR scale is not the only measure of success. Some people find that a certain treatment can stabilise them when they were deteriorating, and that is very important. Some people find that a certain treatment will work incredibly well for a single symptom (e.g. sleep, pain, brain fog), but that for whatever reason (e.g. a general pattern of deterioration) this does not move them up the PR scale. I have found that darkness therapy, initially combined with light therapy, controls my very severe circadian rhythm problem (sleep), and this has made a massive difference to my life. However, my general pattern over the years has been of gradual deterioration. I appear to have stabilised around the time I improved my sleep, and I know perfectly well that being able to sleep on a 24 hour schedule and at the right time of night hugely improves my quality of life. But it still doesn't cure the ME. Nothing cures ME.