False hope?

[neweimear]

Ian Lipkin has said that he thinks that ME/CFS can be solved in 3 to 5 years... provided the resources are made available. http://simmaronresearch.com/2015/12...ears-to-solve-chronic-fatigue-syndrome-mecfs/

A notable increase in resources has recently been directed at ME by the NIH, but Dr. Lipkin has pointed out that the funding level is still "a problem."

I take his estimate of 3-5 years with adequate funding quite seriously, for, if anything, Lipkin seems very conservative and circumspect in his opinions - not one given to exaggerated predictions.

What is needed is the funding.

Don't give up. To borrow a phrase from HIV/AIDS campaigners, "Be here for the cure."

I love that 'be here for the cure'....funny how hope always resurfaces

 

[Gingergrrl]

@neweimear I have not read this entire thread but just wanted to add my voice to please not give up hope yet. I was so inspired by you and your kids starting "Coins for a Cure" (I hope I am getting the title right) and you have a fighting spirit and there are still things to try when the timing is right. Maybe you will go to Kolibri for Rituximab or maybe you will find something else that improves your quality of life. But please do not give up hope... it is still out there. I was so close to giving up in 2015, when I was having daily anaphylaxis to all food and ended up in hospital, but am now so glad that I didn't.

 

[neweimear]

@neweimear I have not read this entire thread but just wanted to add my voice to please not give up hope yet. I was so inspired by you and your kids starting "Coins for a Cure" (I hope I am getting the title right) and you have a fighting spirit and there are still things to try when the timing is right. Maybe you will go to Kolibri for Rituximab or maybe you will find something else that improves your quality of life. But please do not give up hope... it is still out there. I was so close to giving up in 2015, when I was having daily anaphylaxis to all food and ended up in hospital, but am now so glad that I didn't.

Thank you Gingergrrl. You inspire all of us here. I hope things are working out for you with the insurance and that u can continue treatment, after coming so far, there has to be a way forward for you. I appreciate your encouragement and words of hope x

 

[TigerLilea]

@TigerLilea
Care to disclose the brand/type?

The last one I was using for the past few years on and off was Life Extension Foundation's Two-per-Day multi. However, I've had the same problem in the past (without realizing the cause at the time) with other brands. For the time being I'm not taking anything at all but am considering slowly reintroducing some vitamins and minerals one at a time and see if I can figure out which one(s) is/are the culprit. Presently, I'm now trying to get my vitamins and minerals from my food, not supplements.

 

[Chocolove]

@TigerLilea I hear you. All multis are not the same and there are some unscrupulous manufacturers out there who will sell you the cheaper non-absorbable or inactive form of an ingredient, or just fairy dust things in there, or include lots of binders, colorants and excipients that may be intolerable...or oils that have gone rancid.
There are some major gut wrenchers out there that can really make things worse.

I've had very good luck with Andrew Lessman's Procaps Labs brand sold on HSN: Very high quality, no hard pills with binders and excipients, just fine ground powdered effective nutrients in gelatin capsules that are in easy to digest forms, very soothing to the gut.

Also Thorne brand has been a good excipient free and effective find for me.

 

[Jesse2233]

I suspect the work of Lipkin, Nath, and Davis will converge nicely in next 3 years alongside Fluge / Mella's trials. It will not be a cure, but likely repurposed treatment options that will get 60-70% back to functionality

 

[Groggy Doggy]

Hi,
I am 41, mother of 3. I have posted before about feeling suicidal. I don't feel that way now but I feel like I have hit a wall in terms of searching for answers. I went thru a phase of saying...when they find treatment, I will do a,b and c. But now, I have stopped. Is there hope of effective treatments in the next decade? I am starting to think it will be a minimum of a decade. Aside from rituximab.

Am I facing a life sentence with this disease? Is that what I need to accept. Should I stop hoping and get real?
Interested in what u all think?

I can't offer you advise, it's a personal decision. I can speak regarding my journey. I always had hope, found a great doctor, and have been taking repurposed meds for several years. My health has improved, and I am very happy.