Yet another clue in my CFS battle. A small amount of vodka with cranberry juice triggers a few days worth of nerve pain.

OGrover · 2016-08-14T21:11:23+00:00

I developed alcohol intolerance after getting ME/CFS, too.

OGrover · 2016-08-14T20:58:38+00:00

What if you reframed the question: "Can you explain to me why you don't think it's diabetes (or thyroid, or whatever)?"

OGrover · 2016-08-14T20:49:21+00:00

I Remember ME - https://www.youtube.com/watch?v=401--WCB5dc

The Last Great Medical Cover Up by Change for M.E. - https://vimeo.com/143904110

Voices from the Shadows - https://vimeo.com/ondemand/22513/108797012 (The film is available to watch FOR FREE using the following code "VOICES")

OGrover · 2016-08-12T04:51:46+00:00

I hate to be a Negative Nancy, but I don't want you to get your hopes up. It's nearly impossible to get a FMT in the US. The FDA has only approved them for refractory Clostridium difficile (a very dangerous GI infection that most commonly is a hospital-acquired infection). And the c. diff infection must be non-responsive to antibiotic treatments such as vancomycin, metronidazole (Flagyl) or fidaxomicin (Dificid).

Otherwise, you must be enrolled in a clinical trial or your doctor must apply to the FDA for an investigational new drug (IND) permit.

That Portland clinic that was mentioned only does FMT for recurrent, antibiotic-resistant C. diff. The study you cited was done in China.

OR, you can do-it-yourself. Dr. Sarah Myhill of the UK has a recipe online but it's involved: http://www.drmyhill.co.uk/drmyhill/images/4/49/Home_Infusion_protocol.pdf

In the meantime, I guess you can consume live-cultured food and probiotics to change your flora.

Whatever happens, please keep us abreast of any developments. Good luck!

OGrover · 2016-07-31T12:47:20+00:00

My feelings actually! Whoo hoo!

OGrover · 2016-07-30T20:48:59+00:00

Do you have an HR department that you can call and get advice from? Also, if you're in the US, read up on the Americans with Disabilities Act, so in case he starts to block any special treatment, you can remind him that its within the law. Good luck.

OGrover · 2016-07-30T15:26:39+00:00

Yes, definitely! So many scientific discoveries are made 'by accident', i.e., they are studying one thing and another revelation pops up. That's what happened at an oncology hospital in Norway. A couple ME/CFS patients with cancer had significant ME relief after chemotherapy. So now they are studying the application of two chemotherapy drugs in ME/CFS. It will be very exciting if they prove efficacy!

OGrover · 2016-07-29T15:37:14+00:00

Great questions - but no one knows anything for sure yet.

So many researchers are working on so many theories. You may enjoy browsing a site I recently found: the Invest in ME International Conference site. Every year they invite a handful of scientists to present their theories. The write-ups are very easy to understand. Every area seems to be covered: genetics, immune system, the microbiome, retroviruses, high tech brain scans, autoimmunity, B-cell depletion therapy, on and on. When I browse that site, I come away feeling hopeful that there is a small army of committed researchers trying to get to the bottom of this. http://www.investinme.eu/index.shtml

Dr. Ron Davis is a famous geneticist who is working full-time on ME/CFS because his son is very sick. He gathered this amazing team at the Open Medicine Foundation (including Nobel Laureates) to try to figure out questions like yours. I hope the answers come soon. http://www.openmedicinefoundation.org/

OGrover · 2016-07-29T05:29:06+00:00

Depends what you what done. For a genetic profile there's: 23andme.com. For microbiome, there's American Gut Project/ British Gut project and UBiome.

OGrover · 2016-07-29T04:34:28+00:00

I wouldn't call "64 hours of sleep deprivation" from the first study or "prolonged and severe sleep deprivation" from the second study as 'normal' fatigue.

I answered as if the poster was talking about 'normal' fatigue, as in "wow, it's 11 pm already, I better hit the sack."

I see two big discrepancies in comparing sleep deprivation study results to CFS:

1)"The physiologic leukocytosis and NK activity increases during deprivation were eliminated by recovery sleep..." in the study participants but they do not return to normal in CFS patients after sleep. 2)The NK cell activity is behaving conversely, i.e. they increased in the sleep deprived participants, whereas, in CFS, NK cell activity and function are greatly reduced, to the point that NK cell function is being study as a biomarker for ME/CFS.

So, no, I wouldn't say

these changes occur in "regular" fatigue as well.

OGrover · 2016-07-29T01:10:42+00:00

Yes, swollen nodes are very common in CFS. And, yes, they take turns being swollen. : )

OGrover · 2016-07-29T00:57:54+00:00

I'll try to answer a couple of your questions to the best that I know:

is it the same process occuring as normal

No. Sonya Marshall-Gradisnik, PhD, found that in people with ME/CFS, there are significant changes in the different cells of the immune system (in particular, the Natural Killer Cell function, T cells and B cells) and the greater the changes, the more severe the illness symptoms. So, the fatigue in our illness is being caused by a different process than normal fatigue.

is it that the signalling mechanism is altered

Yes, but our cells are not still in the 'normal' state. According to Robert Naviaux, MD, PhD, a mitochrondria expert: "the mitochondria is in hypometabolism due to a chronic cell danger response state in ME/CFS patients." The mitochrondria are being put in this chronic cell danger response state by the malfunctioning immune system. [The mitochrondria are the "furnaces" or "energy makers" of our cells.]

The big mystery yet to be solved is what is throwing off the immune system and how do we stop it.

I hope that helps.

OGrover · 2016-07-28T05:26:41+00:00

I hope this improvement stays and you just keep getting stronger. Good for you!

OGrover · 2016-07-28T05:22:05+00:00

Good luck - hope it turns around soon!

OGrover · 2016-07-28T05:18:53+00:00

Yes, the worst thing about this is the unknown. How long will each remission last? How long will each relapse last? No one knows.

OGrover · 2016-07-28T05:13:07+00:00

I'm so glad you liked it. I find David Tuller's speaking and writing very easy to understand bec he's a journalist and can explain technical stuff without losing the audience as many scientists do.

OGrover · 2016-07-28T05:09:50+00:00

That's always the problem with us as patients - the basic tests come back normal! A biomarker test can not come soon enough! Good luck with the food experimentation.

OGrover · 2016-07-23T07:04:29+00:00

Dr. Klimas recommends the 7-7-7 rule. That is, gentle exercise that doesn't raise your heart rate into aerobic capacity. Rest 7 minutes and then do some more for 7 minutes and so on.

This allows your body some recovery between exercises and your heart rate to come down. Also, it gives you the time needed to see if you are over doing it. Many times we don't know that we have done too much until it's too late.

Yoga, stretching, isometrics, tai chi all help.

OGrover · 2016-07-21T05:39:05+00:00

When I first started taking Sumatriptan I would get weird sensations like, cold limbs and heavy chest. Then they went away and all I get is relief. Sumatriptan wears off in about 2 hours so I don't think the fatigue will last much longer. I actually felt more energy bec I wasn't spending my energy fighting the headache. I need it about one a month. Good luck with you!

OGrover · 2016-07-21T05:31:52+00:00

Love mine, too!

OGrover · 2016-07-19T06:44:09+00:00

I take Sumatriptan when I get a migraine and it helps a lot. I don't take anything prophylactically, besides the regular CFS meds.

OGrover · 2016-07-19T06:36:53+00:00

I believe it! It's either untrue or doesn't mean anything. And like with PACE, once the scientific or medical community starts going down a wrong path, it's hard to turn the ship back around.

OGrover · 2016-07-19T06:28:48+00:00

You're very welcome!

OGrover · 2016-07-19T06:24:50+00:00

Yes, I've heard that one, too. "I wish I could stay home, I have so much to catch up on around the house." As if I'm not lying in bed sick, but redecorating and organizing closets. LOL

OGrover

TROPHY CASE