Poll about whether you have got better or worse

Please select any options which are true for you.

  • I have found treatments which significantly improve my ME

  • I have found treatments which slightly improve my ME

  • I have not found any treatments which help me

  • I have significantly improved over time for no apparent reason

  • I have slightly improved over time for no apparent reason

  • My ME/CFS has gotten worse over time for no apparent reason

  • I have found many treatments which slightly improve my ME, adding up to a significant improvement al


Results are only viewable after voting.
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I am posting this poll because I want to be able to be realistic about hopes for improvement.

Please tick any and all options that are true for you. You can tick multiple options.

By "treatments" I mean anything which has helped you like medications, supplements, or 'alternative' treatments. However for the purposes of this poll please don't include things like Pacing as "treatment" - I feel this is more management than treatment, and anyway pretty much everyone with ME/CFS benefits from avoiding overexertion.

In terms of improving or worsening "over time", please take this to mean in the medium to long term - years or maybe months. Dont tick those boxes just for having a few weeks feeling better or a few weeks feeling worse.

The last word in the last poll option is meant to be "altogether". I think there must be a character limit on naming the poll options.

Thank you :)
 
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Despite having, overall, significant improvement due to a few supplements, I am still severe. Without these treatments I would just be more severe. But am desperately hoping that I will be able to find further treatments which work for me so that I can become moderate instead of severe.
 

msf

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I find polls never have enough choices, so it's always good to add some more detail. I have gone from largely housebound to working full time and starting to exercise again over a period of 5 years and have noticed several discrete improvements after various treatments. I will write a blog in the next week or two summarising them, as I am confident that some proportion of them would help many people with ME.
 

percyval577

Retiring Knight
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I am slowly improving so far and since 2015 from a lower manganese diet. I still must not make mistakes.
The manganese is obviously an issue because I had borrelia, which should have released a lot of Mn into the blood when dividing. I think that the iNOS has got driven high.

Furtherrmore I like to think that then synaptical structures in the thalamus and the basal ganglia have been broken down. I think to help them up by vit B´s (5, 7, 2, 1) and replacing metals, both of which have a good effect if done adroitly. Their success though is not already attributable to those structures.

Alltogether I am quite confident because I was almost fine in 2008/09 but relapsed from replacing meat by puls (big mistake). I felt like a stone for five years. So now it has turned out to be a long and somewhat unpleasant journey back, but I feel much better and sometimes even really lively again.
 
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Wolfcub

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I have to answer honestly and not with false optimism.

I became ill 15 months ago. It's hard to know when the "illness" itself ended and ME/CFS began. It seems like they are the same thing. An illness, started suddenly, peculiar "flu" which only got head, gut, neuro stuff, and energy levels, and no usual upper respiratory stuff/sore throat/swollen glands etc or fever. Couldn't even work out what that initial infection was as bloodwork showed up nothing amiss.

So if you had asked me this in February I would say I had gradually improved over the course of 10-11 months. And not because of any treatments as I found all things I tried made no difference.

By the way I initially tried some botanical anti-infective/anti-viral/bacterial treatments, immune support, anti-inflammatory herbs, Q10, B12, B complex, Vitamin C high dose....etc etc.

But then it started going south again in the Spring this year and even the last few days I felt more or less the same as I felt on week 5, April/May 2018.

Relapses and remissions have set in again after a period when I believed I was getting much better. Same old symptoms right back again. And my exercise capacity has taken a nose dive too. During winter it was steadying out nicely and I wasn't getting much PEM.
But the symptoms are not as dramatic or completely flooring as they were in the beginning.
I would say I'm mild to moderate.

But I am grateful for the hours or even days, in between, when I can feel relatively okay. Even pretty "normal" ! (they come on randomly, just as falling back again also comes on randomly.)

Maybe I just liked Winter for some odd reason....but I don't think that's it.

But we are ALL so different !! The course of things for one person is not going to be the same course for someone else! That is so important to bear in mind.

Methylation hasn't helped me at all. Whereas for others it will make a marked difference....and the same goes for many oher protocols and treatments.
And I really wish you well, Sarah. Some make marked improvements with one protocol or another. May it be the same for you.

I wasn't quite sure how to tick any of the titles in the poll. None of them fitted how I am.
 

Diwi9

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When I find a good treatment, it normally gives me a bounce, but then the glorious effects wither to slight improvement. However, stacking multiple treatments overtime have improved my overall condition. I have more stamina, my POTS is much more controlled, and my crashes are less severe. I still have horrible mornings and brain fog/lethargy like a plague, but feel better the later it gets in the day.

When I was first DX'd with ME/CFS, I learned there was no hope...then dug deeper (like reading experiences on PR) and learned of lots of things people were trying with benefit. Improvements have taken time, especially at the beginning...slow improvement followed by fast setbacks. I'm probably not really doing significantly more, but I don't feel the deep sickness lows I used to and small improvements are extremely encouraging, and so perhaps inflated. My days are still regulated by the illness...I am a completely different person at 10:00 am than I am at 6:00 pm.
 

nyanko_the_sane

It is a cat's life for me.
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If we could address the root cause of our ME, we could find cures. Some of us have been lucky enough to find the root causes in time. Others like me, only learned too late in the process, now I am permanently affected. There is always room for improvement, but there is also always the fear of decline as well. We can each find our way, so long as we don't ever lose hope.
 

PatJ

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horrible mornings
Two things have vastly improved my mornings: better sleep (by taking LDN, Dr. Christopher's Relax-eze, plus 0.75mg liquid melatonin) and realizing that my blood sugar drops at around 5am (which starts a cycle of drops at regular times throughout the day). By getting up very early and eating before 5am, I'm able to avoid the low blood sugar that makes me feel like I've got brain damage every morning.

It's important to head off low blood sugar before it happens, otherwise the body goes through a cascade of stressful compensations that can continue for some time even after raising blood sugar.

Eating regular small meals to keep my blood sugar up throughout the day was one of my big discoveries several years ago. It has improved my quality of life and led to less brainfog.
 

Hip

Senior Member
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You may like to view the results of this poll, which attempts to quantify the improvements attained by some of the leading ME/CFS treatments.

In this poll, a "major improvement" is defined as one where a patient moves up one level on the ME/CFS severity scale of very severe, severe, moderate, mild and remission. For example, if after treatment a patient moves up from severe to moderate, or moves up from mild to remission, those types of one-level improvements are classed as major.

Interestingly, the herpesvirus antiviral Valcyte was able to produce a major improvement in 50% of patients trying it. GcMAF also did well, resulting in major improvements 29% of the time (unfortunately many of the good GcMAF suppliers have been shut down by regulators).



Treatments which have a track record of helping ME/CFS and are used by various ME/CFS doctors, or which have been shown effective in studies, include:

B12 methylcobalamin injections (or transdermal B12 oils)
Methylation protocol
Low-dose naltrexone
Oxymatrine (immunomodulator for enterovirus ME/CFS)
Inosine (good add-on immunomodulator with oxymatrine)
Epivir (for enterovirus ME/CFS)
Valcyte (for HHV-6 or cytomegalovirus ME/CFS)
Valtrex or Famvir (for EBV ME/CFS)
GcMAF injections
Tenofovir (antiviral immunomodulator)
Nexavir (porcine liver extract)

Ampligen (hard to get and expensive)
IVIG (expensive)
Interferon beta (expensive and benefits usually do not last)

Piracetam (good supplement for brain fog)
Nimodipine (for brain fog and brain blood flow)
Methylphenidate (for brain fog and fatigue)
Dichloroacetate (for brain fog, fatigue and pain)
Modafinil (for brain fog)
Moclobemide (for fatigue)

Pyridostigmine (reduces PEM)
D-ribose (to speed up PEM recovery)
Dichloroacetate (improves fatigue and brain fog)
Probiotics and prebiotics (if there are gut issues)
Rifaximin (for IBS or gut dysbiosis)
 

sb4

Senior Member
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I went for significant improvement with different treatments. Difficult what to vote for though as I spent 5yrs going downhill and the last 3 going up hill but I don't feel like I'm improving the baseline condition, just learning to get around it better.
Roughly in order of importance:
Low carb soft foods (significantly reduces heart symptoms, the soft foods lessen gastroparesis)
Mirtazapine
MCT oil
Thiamine / Methylation
General POTS stuff (avoid heat etc)
 

Mary

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@Sarah Metcalf - I've found several things which have helped my energy levels and overall well-being, though nothing has extended my energy envelope - i.e., I feel better in between crashing and recover more quickly from PEM, but I still crash just as easily. I have done and tried so many things over the past 21 years - and here's a summary of what I recall helping the most:

Digestion - betaine HCL - made a huge difference in my digestion - also enabled me to start absorbing all the supplements I take. I think this may be why I don't have SIBO (I've been tested) - SIBO has been linked to low stomach acid

Detoxing (both mercury and other toxins, including chemical solvents) l-glycine, glutamine and inositol helped a lot with this; also a detox specifically for my liver. detoxing used to be a huge problem for me and now it's basically resolved.

Branched chain amino acids - boost my energy a little, and cut my PEM recovery time in half

Andrographis - helped raise NK cell function and reduce time I'm sick

Thiamine, P-5-P, folate, methylcobalamin all boosted energy

Potassium - very important - folate induced a potassium deficiency due to cells working more efficiently and thus requiring more potassium; without the potassium I would have had to stop the folate. Also I had symptoms of low potassium (severe fatigue) before I started folate only I never knew what was the cause, thought it was just another awful symptom - and blood levels were always in the normal range, albeit on the low side. This post explains how people with ME/CFS can have low intracellular potassium despite normal blood work. Without the potassium my quality of life was much worse

Phosphorous - thiamine induced a functional phosphorous deficiency - severe fatigue again. I think it's related to refeeding syndrome. Thiamine has helped my energy so was very glad when I discovered that the severe fatigue which hit a day or 2 after the energy increase was due to low phosphorous. Kefir and monosodium phosphate keep my phosphorous levels okay.

Adrenal glandular - helps support adrenals, very important
 

Mary

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RebeccaRe

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I've been sick for about 11 years now. Although my fatigue has remained on average more or less the same over that period of time (there are always high points and low points), other symptoms such as aches and pains, swollen glands, dizziness, and low-grade fevers have greatly improved over the years without any treatment in particular. My ability to function has also improved as I've learned how to pace myself and listen to my body.

In the last year I've been on Midodrine, which is a medication that is sometimes prescribed to ME/CFS patients who can't tolerate Mestinon. Although I can't say it's completely changed my life, it has improved my functioning by a notch or two. It used to be torture for me to be in the office at work for two hours, and now there are some days where I'm still going strong after 4 hours. And it's allowed me to begin some gentle exercise as well, something that was impossible before.
 
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tiredowl

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I'm now in my late twenties.. Been sick since my early teens. It's pretty bad. Can't leave my house much, and traveling far distances is a challenge. I aways get severe PEM after any extertion and struggle with attending appointments because I'm too sick to get myself there. I would like to rule out some of the more (rare) things but it's difficult with my functionting at this point.

Edit: Forgot to write what treatments has helped. Q10 was helpful for a while, but now it unfortunately causes my POTS to get worse, so I can't take it unless I want a pounding heart all day.
After trying probably 100 different of supplements, I've come to the conclusion that sadly very few of them do anything for my health.
I found B1 to be the most energizing and helpful. Also B12.
Mutaflor worked well for a while, not sure what it did but it lifted my brain fog a lot. But also it increases serotonin which I am sensitive to.
 
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Tammy

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I have slowly improved over the last 4 yrs due to herbal anti-virals, and other supplements that support immune, adrenals, methylation. Clean diet and heavy metal detox smoothie. My protocol was pretty involved. The improvement was not linear. It had its ups and downs...........but every year I am better. This last month has been the best in 23 yrs.!