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From Our Readers: Comments and Suggestions – 7/27/16

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IBS, etc.

Re: Do anorexia, irritable bowel syndrome, chronic fatigue syndrome share a common cause?
Wessels and drawing parallels between these conditions reminds one of Wessely and his one functional somatic syndrome claims. Difference is that Wessels and co. are looking at biological aspects seriously.

I think we should remember the possibility of several subgrouops in CFS. Clinically IBS will resolve on vitamin D, some on antiinflammatory bark, some on antibiotics (small bowel overgrowth), some on rectifyng dysbiosis. This would not nullify the hypothesis but ultimate causes, ongoing causes, co-causes all muddy the waters, perhaps.

Still if pooled immunoglobulin could help a large group that would be great.

As long as psychological considerations appropriate in anorexia are not foisted on the rest of us………..
~Posted by: cormick, Jun 30, 2016

Relation to PEM 

Re: Is Your Brain on Fire? the Younger Video Series

Wonder how this related to PEM.
There are those who want to equate ME with PEM.
What if a patient with large overlap with CC, ICC, and a diagnosis of ME is shown to have brain inflammation i.e. encephalitis, but does not have PEM?
Myalgia + encephalitis not ME?????

This is why I think the equation PEM = ME is premature.
~Posted by: cormick, Jun 30, 2016

Bioamarkers – plural 

Re: Bad Bacteria, Brainstem Abnormalities and Progress with Rituximab: the Invest in ME Conference #1

Good to see biomarkers in the plural.
Debate has been dogged by asserting " we need a biomarker" while ignoring probable heterogenous nature of cohort.
Always worries me when " ME biomarker found" or "ME is real " announced, as to what will happen to the life altering sick with an mE diagnosis who do not have the bm in question. 
~Posted by: cormick, Jun 30, 2016

Calcium: Use with caution 

Re: Closer to a Full Understanding of Chronic Fatigue Syndrome

Would something help our bodies utilize calcium or would taking more calcium help? Thanks, Cruzgirl ~ Posted by: Ly45nn, Jun 29, 2016

Calcium supplementation must be done carefully. You should always take Calcium with food. You should always take it with Vitamin D3. In addition, it is critical that you take Magnesium (which we are all short of anyway) at a different time than the Calcium. Here is a summary of why:

"If a person takes high amounts of calcium without magnesium, they may very well be accelerating the occlusion of arteries in their heart and brain." William Falcon

The plaques in hardened arteries are made of calcium. It's hard to say whether taking a simple calcium supplement will cause damage, but it's not worth the risk. 

Choosing your calcium supplement wisely is equally important. Calcium Carbonate is completely WORTHLESS as a calcium source. I use Calcium Citrate with great results. There are other forms of Calcium out there that are more expensive, but I am not sure whether they are better for the money. 

We are all Vitamin D3 deficient as well. The new RDA is proposed to be 800 IU minimum per day to stay healthy. If you are sick like we are, then much more is needed, something like 2000 IU twice a day, if you can tolerate it. I am taking 1800 IU once per day for over 2 years, but I have problems with migraines with too much Vitamin D3. 

Also, watch the source of the Vitamin D3. There are 2 possibilities: sheep's wool and fish oil. Some people are sensitive to one or the other. If you take 400 IU and have symptoms, try again a few days later. If the symptoms return, switch to the other source and repeat the experiment. I cannot take the sheep's wool source but tolerate the fish oil source fine.

I hope this helps. Good luck everyone. ~ Posted by: Sandy10m, Jun 29, 2016

This is very interesting because when I was having all of the numerous tests run before my diagnosis of CFS, I was told my calcium levels were low. If you look at the symptoms of low calcium, many of them coincide with the symptoms of CFS. ~ Posted by: dee56e, Jun 29, 2016

By the way, if supplementing with calcium you need to consider vit k2 and vit A also. Vit k2 helps put the calcium where it is needed and vit A offsets any side effects from extra vit D3. ~ Posted by: dee56e, Jun 29, 2016

While the first person's question is reasonable, I agree: it would have been greatly helpful if the researchers had referenced whether they thought the calcium deficiency in certain immune cells was due to in-born mutation or cellular malfunction…and via their best guess, whether supplementation (beyond dietary sources; i.e. yogurt, cottage cheese, greens) of this mineral might have potential merit. 

Personally, I tend to doubt the latter. Especially with postmenopausal women, and in spite of mainstream's erroneous advice for increased bone density, it is NOT a good idea to use high or low dose Calcium supplements at this age "if" one is not ALSO supplementing with adequate doses (ratio balanced) of Magnesium, D3 and Vitamin K2 (MK-7). In particular, and with its key (synergistic) partner in D3, it is Vitamin K2 that provides constant surveillance of the blood stream to remove 'excess' calcium (contributes to plaque build-up, increased blood viscosity) and more properly place it in the realm of bone development. 

By now, I say it is inherently harmful for anyone to prescribe 1200 mg Calcium with (mere RDA of) 400 IU D3 for (supposed) "bone health"…which is what happened to a dear 91 y/o Aunt who already had full-blown Osteoporosis (i.e. Dowager's Hump). After all, with so much calcium and too little D3 (depending on geography (north of equator) and darkness of skin, most need D3 at 5000-10000 IU/day to reach optimum blood levels between 50-80) and NO mention, let alone inclusion of Mg or K2, this ill-advisement was causing her more pain and fracturing…and after I sent these missing components with instruction on how to use, it wasn't long before she had improved on both fronts. 

While I like to call these nutrients 'The FOUR pillars of bone health' credible research has confirmed how…while Calcium and Magnesium provide their respective support, but to lesser degree, it is more about the crucially necessary and metabolic interaction between the two vitamins of D3 and K2 that promote our best reality of bone strength and density. 

Needless to say, it will be interesting to see where this latest on cellular Calcium deficiency leads. After making it to the other side after my own years-long challenge with "neuroimmune exhaustion" (CFS/Fibro, Menopause onset) it was only after learning to use the antioxidant CoQ10 (200 mg/day) to target or better support the Mitochondria that I was finally able to turn a significantly 'energized' corner or spend more hours vertically upright, rather than horizontal. And although I can assure I am not of a closed or less than curious mind, this source of supplemented and fairly rapid improvement is why I am now having trouble in thinking that a genetically-induced Calcium deficiency of certain immune cells may have been involved. Hmm, I'll be back…  ~Posted by: SeaVitality, Jun 29, 2016

I have suffered 16 years with CFS/FM. If there is ever a need of trial subjects, I am 100% willing to be one. I live in Ontario, Canada. Good luck, and thank you. This is very exciting news. Cathy Deevey ~Posted by: chdeevey, Jun 30, 2016


Re: New Hemispherx Prez Says Getting Ampligen Approval Top Priority

So happy to read this . It has been such a long time , my daughter and I have tried so many things . Scared to get my hopes up but I can't help it ,sounds like good news to me.  ~Posted by: scruffpine, Jul 1, 2016


Re: NIAID funding to Jackson Laboratory researcher to investigate chronic fatigue syndrome

That's a large funding and time commitment from the US government. It's wonderful! ~ Posted by: Spurky, Jul 4, 2016
From Our Readers: Comments and Suggestions – 6/29/16

Years of experience with LDN

Re: Low Dose Naltrexone – An Effective Treatment for ME/CFS?

Many of us that go to Gordon Medical Associates have already been on the LDN treatment for years. And yes, it helps a lot, and not only the ME/CFS and FM symptoms. The way it works is that there is a branch of the immune system that requires adequate levels of endorphins. ME/CFS and FM patients do not have enough endorphins. Because of this, our immune systems do not attack the viruses and bacteria which make us sick all the time, but our immune systems mistakenly attack normal everyday stuff, like food, water, air, etc. Because of LDN, the immune system is redirected to attack the bad things and stop attacking the good things. Which, in turn, leads to fewer seasonal allergies (like hay fever). However, BE CAREFUL that you increase LDN very slowly when you start taking it. The goal is 3.5 mg per night, but you start with 0.5 mg for a few days, then add another 0.5 mg, etc. Slowly increase or you might have bad symptoms. LDN is so beneficial that I would hate for someone to stop taking it because they started it incorrectly. ~Posted by: Sandy10m, Jun 1, 2016

“We know LDN works for about 65 percent of the fibromyalgia patients. If I give this to ME/CFS patients, and 65 percent of patients improve, then there’s a shared pathology between the two,”

Really! I always thought to a true scientist that just means correlation. And correlation does not equal causation.  ~Posted by: Maggie21, Jun 2, 2016

So interesting, thanks! My white blood cell count is always up a bit, but for no reason my doctor can find. I wonder if it's because of brain inflammation. My brain certainly feels constantly inflamed and I suffer from chronic migraines. I HAVE to try LDN! ~Posted by: Schnitzel, Jun 2, 2016

I started ldn 2 months ago and it relieved 90% of my symptoms other than energy depletIon overnight. I am still required to watch energy very very closely but pain is almost completely gone and freedom of movement is back to normal. Which brings in the problem of watching how much and fast I move. Best thing I've done in 14 years. This is my experience yours may be different. I am so glad more research is being done on LDN with CFS/ME. ~Posted by: jakhere, Jun 1, 2016


Re: Microstructural Havoc: The Immune System, Fatigue and the Brain – An ME/CFS and FM Scenario

It's great about all this research I keep reading. I just wish I knew how it could be applied to my shitty life. Don't you guys? ~Posted by: Schnitzel, Jun 2, 2016

Really interesting – it echoes a lot with me. A homeopath once indicated a problem with my basal ganglia (I didn't know what that was!) after testing. As the other poster said though – I wish we could find out how to apply it to our *#$! lives to help. Research is the 1st step though, and it's great these things are coming out. ~Posted by: thecatswhiskers, Jun 2, 2016


Re: #MillionsMissing: A Day of Global Protest

I'm so thankful for all those who participated in this protest! The emphasis, Millions Missing, is just perfect! I feel angry when I read the facts, listed in this article, concerning how many of us have suffered for so long and have been virtually ignored AND belittled and persecuted by the medical community and all those responsible for funding research for diseases. I felt particularly sad when I read the statement about not having to wait another 30 years. I've suffered for 35 years, my youth now behind me. I never dreamed that by this time very little would have progressed in way of research, discovery and treatment. Thank you, thank you for all those who do what they can to get us the help we need and deserve! ~Posted by: cadiwe64, Jun 2, 2016

Thank you Erica for this piece on the MillionsMissing protest efforts! And thanks to all participants! I was at the SF one w/ my mom and see us in the pic! So thankful I could make it, even if it was tough. A fellow patient and advocate I met there met w/ our local rep Wed. We are both from Central CA.  ~ Posted by: minivette, Jun 18, 2016

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