ME Activity Level Over the Years Poll

[gbells]

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.

 

[valentinelynx]

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.

 

[bensmith]

1< 0

 

[gbells]

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]

My activity level was 2 at 2 years and then improved to my current level of 6 at 12 years with four months of 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.

 

[xebex]

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%.

 

[gbells]

Just answer the highest sustainable activity level not the lows.

 

[Wishful]

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]

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.

 

[sometexan84]

Physically, I'm a 10

 

[bensmith]

@ljimbo423 your story is crazy. It has made me want to try and fix my gut. Taking one probiotic sk far i thinknits helping.

 

[gregh286]

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

 

[gbells]

in my Self Experimentation blog you can see physical changes from induced apoptosis.

I think VTose would be preferable because it is simpler, 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.

I have made suggestions to the VTose team to accelerate their progress.

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

 

[gbells]

I was reading articles about the percentage of ME patients who are severely disabled. The article stated that it was only 25% however judging from this poll that only holds true for the first three years. After 4 years or more 83% of the patients are severely disabled with activity levels of 3 or worse. I think the official information sources are underestimating the amount of disability ME causes.

Twenty-five percent of ME/CFS patients have a very severe form of it.[6][7] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so.[8][9]

https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome

If you think about it from the standpoint of the insurance companies this is a great illness to deny because initially people are semi-functional so they can deny the claims but then after the time limits for denials expire the person become severely disabled and can't claim under the insurance. I wonder if this is one reason why NIH still underfunds it.

 

[Mary]

THIS THREAD IS BEING RE-OPENED. PLEASE KEEP DISCUSSION ON-TOPIC, DIRECTING RELATING TO THE SUBJECT OF POLL.

 

[Rvanson]

I was bedbound when I first caught MECFS at 40 years of age. I remember those bedbound months. I current "doctor" does not know what MECFS is like. I am dropping him. I am not going to take the Covid-19 virus. At my age
and condition now, being bedbound at 65 would kill me just as fast as Covid-19. I was lucky.that after almost 10 months I could work again, but not real heavy. Couple of years ago to where I am on SSDI now. I hate not working. if this keeps up I will be bed bound again and I will die, but Ive had enough of this disease that I dont care anymore.
Activity level at 3 or 4.