Forum

Fatigue research

So I got to thinking.

Given that MS fatigue is the most complained about symptom,

why are more bespoke treatments for MS fatigue not a huge priority?

Most MS fatigue treatments are usually originally made for other diseases,

ie: Modafinil was originally used to help narcolepsy.

I think we deserve a fatigue treatment totally dedicated to MS, (or a defined combination of the best suitable treatments available),

It makes sense.

My life is ruined by fatigue and according to statistics, it will become progressively worse.

I don’t feel that MS fatigue is taken seriously enough. “i’'m utterly exhausted”

Oh that’s a very common symptom of MS, nearly everyone gets it…

Why isn’t there more urgent research and/ or solutions to such a massive life limiting symptom?

Also, on American forums, (using just one example), huge success treating fatigue has been attributed

to the combination of Adderall with Modafinil,

Adderal is of course is not prescribed in this country for fatigue.

I have spoken to lots of people who say their life has been transformed by the combination, and they get up before 9 am and

stay awake all day with no sleeping, they feel normal!

To my mind, the MS Society should use its power to collate and evaluate all the different methods for treating fatigue globally,

and pass the vital results on to us and our doctors.

After all, is knowledge not power?

My fatigue is destroying my life and I think the MS Society should address this crippling affliction more.

It’s 2020, why on earth with all the research and donations am I not awake?

You might find this Barts Blog interesting.

Control of Fatigue a Placebo effect? – Multiple Sclerosis Research Blog (multiple-sclerosis-research.org)

Hi, I have a short window for outings and appointments due to fatigue…it`s 11-4 and then back to bed!

Boudsx

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The placebo effect is a well documented phenomenon in medicine and trials, but should it’s existence then mean abandoning

all further research for new treatments?

I don’t understand why it hasn’t been researched more, given the prevalence and debilitating effects of MS fatigue,

Just saying placebos are sometimes as effective as medicine does not take away the real need for a workable solution,

Why in 2020 can people change sex, transplant organs etc, etc., yet not find a way to wake me up??

It seems ridiculous!

They still don’t know the cause of MS fatigue and everyone is just expected to live with it.

Until such days as a cure is available, why is one of the most life limiting symptoms not being properly addressed?

i’m sure nobody would expect any stimulant to be 100% effective during an exacerbation, but why can’t I,

in the modern day world, expect to have a medicine that enables me to be awake all day without sleeping?

We need help for MS fatigue, not narcolepsy or anything else, but absolutely nobody seems to be interested

I

I’m right there with you. I can honestly say if my fatigue should worsen further over the years, I could see myself contemplating a day trip to Dignitas

I agree and thought the blog rather supported your point that there are no effective drugs available for fatigue. Personally, I find exercise to be the most useful solution to dealing with fatigue and even small amounts seem to help.

I hope you find something that works for you.

I have to say, I don’t suffer from fatigue at all. I put it down to lifestyle, diet and exercise. I hold down a full time job too. But, i am only 2 years diagnosed.

Hi, my fatigue is terrible, I to have a short window, which year on year seems to be getting shorter, I did try the fatigue meds, but they did nothing for me. I do get a lot of symptoms with MS, but this is the worst, it spoils everything.

Jean x

That’s great!. I never used to suffer so much, unfortunately the fatigue is progressive

If you could actually let someone experience how bad fatigue can be, they wouldn’t believe it.

Further research into MS fatigue should be a given,

I think it beggars belief that no solution is even being contemplated.

Outrageous, MS Society, we are really suffering!

God, I wish I had the energy and wherewithal to organise a global petition to address this.

If nobody complains, expects, or even asks, why should the MS Society even start to try to help?

Same for you, thank you.

Anyone else take Acetlyl L Carnitine and alpha lipoid acid to combat it?

I took this advice from an American MS forum, where the neuro said in his opinion, it was the only available effective fatigue treatment

for MS?

My sister, who has cushing’s (another autoimmune disease) swears by it, I’m so far on the fence.

Wouldn’t a separate thread detailing any supplement that helped fatigue or indeed other MS symptoms (such as restless legs for example), be very useful?

It’s ridiculous, I’m so disappointed by my post!

I was imagining , - desperately hoping for hundreds of replies,

Perhaps even a call to arms by fellow MS fatigue sufferers , who agreed with me and demanded

immediate change!

What a stupid fantasist I am,

after all, where would we even begin, and who would even listen?

With no hint of irony, maybe everyone is too just tired to care!

I hate feeling so impotent!

Sorry you feel like this Sparkledust…you’re not on your own, I would so sign a petition, I no longer have the mental capacity to organise anything, due to MS, but I would support anyone who did. I think there would be plenty on here to support you. so please don’t feel let down.

Jean x

Thanks Jean, really kind of you!

Do you think I should start a petition?

I don’t even know who to send it to

(all MS societies and Boris?

It’s not up to him do to anything though is it?

Well Saprkledust if you wont to and can, then yes start this petition, I will sign it, I would aim it at local MP, MS society and trust and the health secretary, but its a big thing, have you the mind, or energy, I know I haven’t the energy, but I wil support you, as fatigue is a killer for me, good luck love, chin up and take care.

Jean x

I really want to but I am so limited by fatigue too, and my rubbish memory!

Unsure if I’m capable of being focussed enough, but I am desperate for change.

Would it all be changed just by a petition?

I don’t get up til at least 1 pm, even if I’m sleeping at 9pm

then of course an afternoon sleep!

Two weeks ago I slept 18 hours!!!

How would I get lots of MS’ers to even see the petition?

Could it be done piecemeal?

What would I petition for, just bespoke fatigue medication?

Does everyone think I’m being stupid, Unrealistic and should give up?

Opinions appreciated!

No I for 1 don’t think you’re stupid, I just think like all of us you want to have some kind of normal life. I’m the same, always bloody sleeping, me and my hubby have no social life to speak of, never go out in an evening, I’m normally in bed and sleeping between 8.30/9pm, its bloody ridiculas. If I was you I wouldn’t waste what energy I had on this, because to be quite honest I’m not sure you’d get anywhere, I think all the monies for research go on new drugs to slow this condition down, but you’re totally right about this, something should be done, for me I will start by mentioning t to my MS nurse/neuro. Take care love and have the best day you can.

Jean x

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Thanks Jean!

Just up and feeling yuk, all the excitement has got to me anyway!

I appreciate your candour and honesty xxx

No worries love, once of a day I’d have been right up there fighting the cause, but sadly now that can’t happen, just something else MS has robbed me of.

Jean x

I take both of those. Also Coenzyme Q10, L-arginine, and NAC.

I did a lot of researching before I started to take them. I now swear by them. Along with a really good vitamin B complex, that is highly absorbable. Has made a really big difference to me. I introduced them one by one so could see what worked for me. I don’t want to waste money on things that have no effect! I also take a range of herbs. Took quite some time to find the right herbs for me, as I was working on my own without the help of a herbalist.

I’ll try to explain briefly why they might work.

With MS comes mitochondrial dysfunction, to the extent that it is now thought that MS may be a mitochondrial disease. The mitochondria are our power engine. They are in every cell, to power that cell. The brain uses more energy than anything else, but muscles also use a lot. Both are full of mitochondria.

If you have mitochondrial dysfunction they will not be able to produce so much energy - therefore expect fatigue, of brain and muscle.

So what can be done about mitochondrial dysfunction? Or a better way to frame it, how can we improve mitochondrial function? Quite a bit it would seem. You’ll find that NAC, alpha-lipoic acid, Acetyl L Carnitine, L-arginine are frequently mentioned. (You can find plenty of papers that can explain on a chemical level within the cell how they work.) Mitochondrial dysfunction is intricately connected with oxidative stress. Oxidative stress is something we can reduce, through diet, herbs, and supplements such as vitamin C, D etc.

Coenzyme Q10 levels reduce as we age. It is essential in the mitochondria in the electron transfer chain (i.e. the energy production chain), and is a powerful antioxidant. It is also essential in the conversion of white fat into energy.

My body had become very inefficient at burning white fat, and I had been putting on weight gradually over the last couple of years or so - symptoms just like an underactive thyroid, weight gain, low energy, feeling cold all the time, though my thyroid levels were fine. I started on a normal dose of coenzyme Q10 and the fat just fell away, lost 1 1/2 stone in 2 months, with no change of diet, and it then stabilised at the weight I had been for 30 years previously. No muscle loss, just fat loss, and energy levels rose at the same time, and now I no longer feel the cold. To be honest I was initially somewhat concerned about the weight loss, thinking cancer, or muscle loss, but it tied in with what is known about its effect on fat metabolism.

The vitamin Bs are essential in the Krebs cycle, as co-enzymes involved in the breakdown of nutrients into energy production, and involved in numerous aspects of brain function.