How do our chances compare to MS?

[snowathlete]

I often see or hear people making comparisons between ME and MS. MS obviously has more awareness and less bull said about it, and more money spent on it.
I'm wondering though, how the outlook for the two illnesses compare? ME has promising items like Rituximab, Lipkin and other big researchers looking hard for a pathogen, and maybe even Ampligen a first drug perhaps on the horizon. How does that compare to MS? Do they have anythingsignificantly, big names, treatments on the horizon?

 

[Seven7]

What I don't understand is, if it has been proven inflammation is present in both. Why we cannot use the same treatment MS gets for relapses (hospitalized IV w steroids?), if it works for them, should work for us. And have anybody try it????

My neuro did not agree to try any MS drugs on me, even though he was convinced I had MS (but LP came back negative)

 

[Sallysblooms]

We can use some safe "treatments" for MS like the information from Dr. Wahls and other places. Sure helped me with Dysautonmia. Dr. Wahls is doing very well.

 

[MishMash]

Most of the injectible MS drugs of the past 15 years were bogus crap. Poor patients tortured themselves for nothing. Let's not sugar coat it. The drug companies claim they "reduce lesions" on the brain. But number of lesions and symptoms (numbness, weakness, fatigue, cognitive deficit) are only loosely correlated in MS. Some people have massive lesions and only trivial symptoms. Some are bed-ridden and have few lesions.

Having said that, there is a new MS drug, BG-12, made and tested by Biogen, which acts as a general immunmodulator and anti-inflammatory. Kind of like Ampligen claims to work (if you believe Ampligen really works). The trials have been legitimately successful and exciting, in my view. We may finally have a winner folks.

I have read multiple explanations as to why BG-12 works so well against MS. Biogen says it targets oxidaitve stress and glutathione depletion, which might make it an excellent off label choice for CFS. Other people have said it beefs up the blood-brain barrier, so it isn't as permeable. Probably does all of the above.

I would be very interested to see this drug tested with PWCs. BTW it is oral, and has very few side effects. Of course many researchers are off and running with the RTX trials, so it may take a while to get them interested in BG-12.

 

[xks201]

I see a lot of similar symptoms between MS, CFS, and fibromyalgia, granted they all have different diagnostic criteria.

 

[ukxmrv]

One of my neighbours has MS and been offered medical trials of drugs over the last 10 years. Few have helped her but she has the relapsing/remitting type and is able to scuba dive, work and have a life that I can only dream about.

A few months ago I was on one of the MS pages and there was a list of research trials and published papers. Quite a few.

I guess that this is big difference in the UK. Having access to research trials and experimental treatments. At least for my neighbour in London.

Also when she has a relapse she is seen in hospital and has access to a MS nurse on the phone and a neurologist who doesn't think she is a nutter.

 

[snowathlete]

Also when she has a relapse she is seen in hospital and has access to a MS nurse on the phone and a neurologist who doesn't think she is a nutter.

yeah thats a huge difference, the level of support.

i also have a friend with MS and she is alot more well than me.

 

[taniaaust1]

I think many of us are worst off then most MS patients. My elderly neighbour has had MS for a very long time (maybe 30 years).. she is far more able to do things then me, she's even come over and helped do my garden on one occassion (cause I cant do it much). She's in her 80s.. 80s long term MS and far more able then me.

I also know someone else who has MS.. she also was "most" of the time far able to do things then I was. (I say "most" as during the 3-4 years I was in contact with her, she did at one point get worst with her MS and lost some of her sight in an eye for a couple of months.. I think thou it did get better some again. During that time she was worst.. she was then spending more time in bed too (but not as much as I was). I know she got physically better again and was back working part time (something I cant do).

Neither of the two I know above.. were on any MS treatments, nor were having to take a ton of supplements for deficiencies and everything else like I do. (I feel kind of bad for thinking Im worst off then they are .. I hope comparing but its hate not to think like that when one is in her 80s and more able then me and the other is still working).

The one who MS got worst a couple of times during the time period we were in good contact with each other.. she seemed to recover from the degree that her MS had floored her too.. faster then what I do when my ME takes a dive to a similar level. 2-3 months later she was back to work.. whereas me.. when I dive like that it takes years for me to pick back up.

I remember one visit from her.. where we both were laying due to exhaustion (me exhaustion, she was a bit tired) while she was visiting (obviously she felt well enough to drive and go visiting).. I had my mattress on the lounge room laying there and she layed on my massage table after I suggested it. I was soo exhausted that late afternoon that I didnt even get up to put the light on, so it got darker and darker.. so we ended up talking in the dark. (i guess she must of been tired too to not get up and put on my lights either..or maybe she thought I was trying to conserve electricity or something.. I was kind of embarrassed about not putting on that light and about what she must of thought about me not doing that.. we were friends but not close friends.. so who knows what she thought about me leaving guests in the dark. I just wasnt up to standing and walking just a few metres to do that.

 

[elbosque]

I think we need to be aware that MS and ME/CFS have widely varying degrees of incapacitation that vary from patient to patient and that also vary from time to time for each patient I've a friend whose MS has steadily advanced to the place where he in now in a wheel chair and needs help with almost all of the tasks he has to do. Of course, there are also people with ME/CFS who are in the same or worse condition. On the other hand, my current level of illness with ME/CFS allows me to continue working as long as I pace myself. I also am lucky to have an employer who is willing to be very flexible because of my illness. Over the last year, I have had a number of collapses where I have had to be bed bound from a few days to a week. I realize that every day I have that I am able to work and do some things is a gift. I know that there are specific triggers which will cause me to crash. I also know I sometimes have a crash and cannot relate it to an activity or a stress. MS patients are in the same boat as us. Every day they have mobility is a gift to them too. I think they key differences between the chances of people with ME/CFS versus those with MS are to do with the level of research, treatments, and public and medical community knowledge. But the fact is that there are people with ME/CFS and MS who get sicker very quickly and some who seem to hold the same or get a bit better. No one seems to have a definite answer as to why this is so.

 

[beaverfury]

I often see or hear people making comparisons between ME and MS. MS obviously has more awareness and less bull said about it, and more money spent on it.
I'm wondering though, how the outlook for the two illnesses compare? ME has promising items like Rituximab, Lipkin and other big researchers looking hard for a pathogen, and maybe even Ampligen a first drug perhaps on the horizon. How does that compare to MS? Do they have anythingsignificantly, big names, treatments on the horizon?

Blood–brain barrier breakdown http://en.wikipedia.org/wiki/Multiple_sclerosis
The blood–brain barrier is a part of the capillary system that prevents the entry of T cells into the central nervous system.[4] However, it may become permeable to these types of cells because of an infection or a virus.[4] When the blood–brain barrier regains its integrity, typically after the infection or virus has cleared, the T cells are trapped inside the brain.

I wonder how similar the pathology of ME/CFS is compared to MS regarding the blood brain barrier?

http://en.wikipedia.org/wiki/Multiple_sclerosis
In MS, T cells gain entry into the brain via disruptions in the blood–brain barrier. Evidence from animal models also point to a role of B cells in addition to T cells in development of the disease.[28]
The T cells recognize myelin as foreign and attack it as if it were an invading virus. This triggers inflammatory processes, stimulating other immune cells and soluble factors like cytokines and antibodies. Further leaks form in the blood–brain barrier, which in turn cause a number of other damaging effects such as swelling, activation of macrophages, and more activation of cytokines and other destructive proteins.[4]

http://en.wikipedia.org/wiki/Blood_brain_barrier
The blood–brain barrier becomes more permeable during inflammation. This allows some antibiotics and phagocytes to move across the BBB. However, this also allows bacteria and viruses to infiltrate the BBB.[5][6] An exception to the bacterial exclusion is the diseases caused by spirochetes, such as Borrelia, which causes Lyme disease, and Treponema pallidum, which causes syphilis. These harmful bacteria seem to breach the blood–brain barrier by physically tunneling through the blood vessel walls[citation needed].