ME Activity Level Poll

What is your current ME Year and Activity level? (pick one)


  • Total voters
    45
  • Poll closed .

gbells

Improved ME from 2 to 6
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To answer this poll please find the selection that corresponds to how long you have ME and where your current highest sustainable activity level is and select it. Thank you.
 
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valentinelynx

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Do you have definitions of the Activity Levels or do you just want an assessment between 0 and 10? I've answered with the latter assumption.
 

gbells

Improved ME from 2 to 6
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It's the same one you're supposed to fill out on your PR profile. I just broke it down into three tiers for the poll.

Activity level Scale:

Good
10—Fully recovered, or in full remission. 9—Normal life activity level, mild symptoms. 8—Near-normal life activity level, but still symptomatic. 7—Able to work full-time but with difficulty. 6—Six to seven hours activity a day, able to work part-time. 5—Four to five hours of work/activity a day.

Moderate
4—Three to four hours of work/activity a day. 3—Leave house several times a week, two hours work/activity at home a day.

Severe
2—Leave house once a week, concentrate one hour a day. 1—Bedridden most of day, very rarely leave house.
0—Bedridden constantly, except to go to bathroom.
 

gbells

Improved ME from 2 to 6
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My activity level was 2 at 2 years and then improved to my current level of 6 at 12 years with four months of Craysing Immunotherapy. Progress photos of toe periostitis are posted in my Self Experimenting a New ME Treatment blog. I expect the modified VTose drug to achieve the same results. I have read that ME in adults is expected to progressively worsen activity level.
 
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xebex

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i marked as activity level 3-4 and i've had ME for 10 years however i had mild ME (which most people would find great joy in telling me i didn't actually have ME because I could exercise) for the first 4 years which give me a function level of around 90% - my function level slowly started dropping about 6 years ago, until very sudden drop to about 30% 3.5 years ago, over time i managed to improve back to about 60% and have recently dropped back again to 30%.
 
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Wishful

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I'm not sure where to place myself on that scale. Physically, I'm a 10, but if I'm faced with a task requiring decision-making or faced with frustrating obstacles (need to do this, but that means doing that, and this is in the way...), I'm probably below 5.
 

ljimbo423

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I've actually had ME/CFS for 43 years. I first got it at 18 and was severe but recovered to about 80% after a couple of years. I'm now 61.

Then I slowly declined until I was 30. At that time I became disabled. After several years I slowly became mild again and was able to even jog at a slow pace for 15-20 minutes every other day.

Then at about 42 I slowly became severe and mostly bedridden for several years. After several years I started researching relentlessly, cleaning up my diet and taking supplements. I've slowly recovered to a solid 6 now and hope to continue to improve.

Being able to go from severe to mild a couple of times lets me know that my ME/CFS is not written in stone and that I can improve.
 

Rvanson

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Caught my CFS/ME just before I was going get married, at almost 41. Needless to say but that ended that. Been a bachelor ever since then, with a few relationships as I became well enough to work, but crashed on the weekends, to recover enough to work another week. Had to take SSDI a couple of years ago. I can't work anymore, and I liked working. No relationships for well over 8 years now at 65. Getting kind of pretty lonely.

Just hope I don't get bedridden. If that happens I've no one to take any care of me, so suicide will be my only option. I'll be damned if I'll ever sleep in a tent on a street, as I don't have any insurance for an old folks home.

25 years is enough for me anyhow, as I can't enjoy much these days. I am tired of everyday being a struggle to survive. Survive for what reason? Hope the COVID-19 virus hits me and puts and end to this awful disease.
 
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Caught my CFS/ME just before I was going get married, at almost 41. Needless to say but that ended that. Been a bachelor ever since then, with a few relationships as I became well enough to work, but crashed on the weekends, to recover enough to work another week. Had to take SSDI a couple of years ago. I can't work anymore, and I liked working. No relationships for well over 8 years now at 65. Getting kind of pretty lonely.

Just hope I don't get bedridden. If that happens I've no one to take any care of me, so suicide will be my only option. I'll be damned if I'll ever sleep in a tent on a street, as I don't have any insurance for an old folks home.

25 years is enough for me anyhow, as I can't enjoy much these days. I am tired of everyday being a struggle to survive. Survive for what reason? Hope the COVID-19 virus hits me and puts and end to this awful disease.
I feel you. My story is pretty sad. I'm 34 and have never been in a relationship ever. When I was healthy I let anxiety and social phobia get in the way of pursuing a relationship. Now that I'm housebound and have no idea if I will ever improve to a functional level, experiencing a relationship is most likely impossible. I will probably die never knowing what it's like to be with a woman. What a sad life I now have. I think about shooting myself sometimes but here I am still clinging to whatever hope I have left.
 

gregh286

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Was 4 now between 8 and 9.
Removed triggers gluten wheat smoke sugar caffeine and alcohol.

Anti inflammatory diet works best. Makers diet. Not processed.

Took months to reset.
Still if I take wheat I get bad colitis and.inbearable tennis elbow and wicked joint pain. If I take even gluten free beer I still have fatigue.
If I take caffeine I get interstitial cystitis.
The list goes on.

Every action has a bad reaction but always in delay like PEM. E.g take gluten Monday crash Wednesday.

Supplements that really help is ala, aminos and extra taurine.
Ibrufen around 2000mg over the day alleviates a crash. I don't know mechanism maybe it numb cell receptors or something.

We are very sensitive to environment. Dont know why.
Cell danger response is alive and well.
Ask any lake taho./NZ sheep dippers /gulf war veterans./ long covid etc
 
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Thank you for the support Rvanson. You are strong for going so long with this nasty disease. I am sorry to hear about what happened with your fiance.

I do believe there is more when we pass as well. It's hard to believe that everything was created from nothingness. Imagine if an artist created a drawing of a person. That person would not know anything about the artist or how and why it was created. I feel the same applies to us. More than once I experienced sleep paralysis where I'm semi awake, can't breathe and can't move. At first I panic from lack of air and I desperately try to shake out of it. Once I accepted that I might die, the panic stopped and great sense of peace surrounded me. At that moment I was snapped out of paralysis. If it turns out to be nothingness when we pass then even that is not bad. There's nothing to fear if there is no consciousness so either way we can't lose.

I'm sure whatever is on the other side will be better than anything we have experienced in this world. Stay strong my friend.
 

gbells

Improved ME from 2 to 6
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What is Craysing Immunotherapy? I've never heard of it.
That's my own immunotherapy system. It hasn't been released yet. It is detailed in my Self Experimentation blog where you can see physical changes from induced apoptosis.

I think VTose would be preferable because it is simpler, would have lower cost to patients and has fewer risks so I'm not sure if it's worth doing the work required to get Craysing Immunotherapy up and running commercially (it would be a bad business decision). In that case I will release my system as a nutritional neurofeedback program without the immunotherapy component. That would still be valuable for ME patients with VTose for nutritional support since it is important to avoid some foods and supplement and include some supplements to optimize the process and give it the best chance of success. Craysing allows one to specifically determine doses themselves without using laboratories. For example, one could crayse for vitamin D3 and determine the optimal weekly dosing amount.

I have made suggestions to the VTose team to accelerate their progress. If there is a long delay I will reconsider releasing it.

I started an immunotherapy group for VTose and Craysing. Join if you are interested in the approaches.

https://forums.phoenixrising.me/groups/immunotherapies-vtose-and-craysing.91/about
 
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Rvanson

Senior Member
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Thank you for the support Rvanson. You are strong for going so long with this nasty disease. I am sorry to hear about what happened with your fiance.

I do believe there is more when we pass as well. It's hard to believe that everything was created from nothingness. Imagine if an artist created a drawing of a person. That person would not know anything about the artist or how and why it was created. I feel the same applies to us. More than once I experienced sleep paralysis where I'm semi awake, can't breathe and can't move. At first I panic from lack of air and I desperately try to shake out of it. Once I accepted that I might die, the panic stopped and great sense of peace surrounded me. At that moment I was snapped out of paralysis. If it turns out to be nothingness when we pass then even that is not bad. There's nothing to fear if there is no consciousness so either way we can't lose.

I'm sure whatever is on the other side will be better than anything we have experienced in this world. Stay strong my friend.
Yes, even if, when we die, that's the end of it, according to atheism. But after my experience with God, I know that we all have a soul, which inhabits a human body. I don't blame God for my illness either. I only wish I could find a mate who also has CFS/ME like me for mutual companionship and support, but so far no luck in that department. I'll continue to live until I die, but if it comes to being bed bound, I'll be heading to that place I spoke of previously.
 

gbells

Improved ME from 2 to 6
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You sound delusional.

I understand, I like such fantasies myself. :D
A lot of theists confuse athiesm with materialism which isn't true. I'm an athiest but I believe that we are actually digital beings and that our experience is actually a simulation and that we are kidnapped digital beings living in a hijacked malicious level of a massive digital simulation. Given that there is no evidence for souls (you can't just call a dead christian on a phone and verify heaven) and the efficacy of prayer, but there is evidence for reincarnational memories in children (in 20% of children the memory wipe doesn't fully work and they have verifiable memories-Jim Tucker from the University of Virginia and Ian Stephensen MD) I think that when you die most people have their memories deleted (go into "the light") and get reinserted back into the earth simulation as a new amnesic person unless they realize the whole process is actually a trick, refuse to come back and fight. I believe that entities on the other levels consider this place to be very evil but are prevented from helping because the hackers running this level threaten to permanently delete us if they interfere. If you refuse you can find a network hub and escape to a better level and regain your freedom.

This corrupted level, historical earth simulation is a pointless process since you can't learn if you can't remember anything but it could be useful to the narcissistic controllers of the level who get to patent our discoveries, laugh at our suffering and revel in the control. They are sad, pathetic little beings who, while they have control over this level, exist in exile and can not leave. Their happiness in controlling the level is just a sad defense mechanism to cover up their pain in losing their own freedom. The jailers become the prisoners themselves and after a few milennia of doing this must be tired of it.

These corrupt entities aren't gods, though they like to think they are. They are just sad, self-absorbed, limited entities which have the keys to the jail and run it.

Believing in gods just gives you a false sense of security, opens you up to manipulation by the entities controlling the simulation (or human religious leaders) and traps you in the simulation. I suggest you be leery of the entities you meet after you die, don't assume they care about you just because they costume up as your favorite pet god or pretend to be someone you loved from your memory. Test everything.

This is not to say that I think there is no benefit for some parts of religion. Morality is great if you base it on cause and effect and apply it to the current times. This is proven in the psychology of happiness. But believing that this place is controlled by a loving, all powerful, all knowing being or beings who need human sacrifices, use deception, engage in large scale human slaughter of innocents and ignore human pleas for help isn't rational and just sets you up to be exploited by sociopathic cult leaders here and entities pretending to be gods or past loved ones after you die.
 
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