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From Our Readers: Comments and Suggestions – 3/9/16

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Well written 

Re: Hope for Chronic Fatigue Syndrome

Great article exposing the PACE failure. Those of us that suffer from CFS know what a sad joke PACE is. I guess the IOM findings don't mean much across the pond. The unscientific trash they call a study has done nothing but hurt those of us that have CFS.  ~Posted by: jadam914, Feb 5, 2016


Re: Dr. Paul Cheney Discusses the Benefits of Klonopin

This is ridiculous, stating that klonopin is non addictive. I am a pharmacy student and I know first hand how addictive and dangerous this drug can be. The withdrawals are horrible, I have been through them and I would never wish them upon anyone so saying that it's a myth, I would definitely rethink that. 

If it were up to me I would ban this drug from the market completely except only maybe for very very severe seizure disorders but even then it's a huge risk. Pharmaceutical companies make millions off of this horrible drug at the expense of people's health and it makes me sick. I'm sorry for ranting but it's the truth.  ~Posted by: Zzboggio, Feb 5, 2016

Devastating illness
Re: Chronic Fatigue Syndrome at Age 16 Years

ME/CFS is a devastating illness. My 27 year old sister has been suffering for the past 5 years, and has deteriorated to the point of having to move back in with our parents as she can't live Independently. More needs to be done to find a cause and cure for this disease. Please consider signing this petition for funding for research into the cause of ME in the UK ~ Posted by: nsilmon, Feb 6, 2016

ME patients are an atrociously treated group of patients 

Re: Police Harass Bedbound ME/CFS Patient Who Started Petition for Care Facility

ME/CFS patients are treated very poorly around the world. And their disease is so poorly understood. Please help get the funding needed to research ME/CFS in the UK Https:// ~ Posted by: nsilmon, Feb 6, 2016

It's hard to maintain hope

Re: Solve ME/CFS Initiative Grades the HHS Response to CFSAC Recommendations

The IOM recommendations for ME/CFS gave me such hope! I didn't think the government could possibly keep this monstrous disease that myself and so many others are suffering from in a psychological category. I believe abuse fromdoctors and loved ones would stop after the true nature of this disease was finally validated and treated like disease worthy of compassion and proper respect. I'm suffering horribly as I lie in this bed watching the clock count down the days of what a normal lifespan is. The decades of a young adult are over, middle age is just a few years shy of the conversion into old age. By the time anything is enacted that could actually help me I will be elderly. My chance of living a life gone, leaving me to face my final years alone and infirm. That is IF the federal government EVER stops this abuse actively being perpetrated upon desperately ill human beings by acting on the facts that now exist. I read this article with first dismay, then horror that theyve done this again. Dismissed us all as if we were lower than dogs.. Who are treated with more compassion than ME/CFS sufferers are. I am abused and ridiculed by neighbors. I am afraid to let my doctor know how sick I now am for fear of what their "treatment" would do to make this even worse. 

I don't like it, who would, but I DO understand why this dusease has such a high suicide rate. How does one retain high spirits when lived ones say "Do you plan to lay in that bed for the rest of my life? You just don't have the will power to push through the pain like the rest of us do." Then they state their intention to not put their life on hold and they are moving on. I'm alone and afraid. I haven't been hugged or comforted in years. I'm just laying here suffering. It's an abomination. ~ MaschelleMEcfs, Feb 11, 2016

How Interesting 

Re: Chocolate's Potential Health Benefits – and its Effect on Chronic Fatigue Syndrome Patients

I have always disliked sweets.. I didnt even like ice cream or fruit. On the contrary I craved salty foods. I craved salt to the point of currying constant criticism from any and all people who ate with me. 

Since becoming ill with ME-CFS my salt craving didn't lessen, but a huge craving for chocolate, dark chocolate to be precise, and coffee suddenly developed. I was very shocked about the dark chocolate craving. 

It's interesting to read the possible "why" to the new cravings. I am experiencing severe cognitive fatigue and vascular issues. My blood pressure suddenly started swinging unpredictability from being very low to extremely high. I'd NEVER had a blood pressure issue. The new, slow blood circulation has caused many painful chronic issues in my peripheral extremities. It's been discovered that, in spite of my salt intake (oh! And avocados, bananas, apples tomato juice and cranberry/grape juice) I suffer from sodium and potassium deficiencies. My doctor's advice? Eat a banana every other day and add more salt to my food… Really?…. That would be unpalatable! All of my old and new cravings appear to be for good reasons. I find this very fascinating! I wonder, since this article was initially published in 2009, what science says now, in 2016, regarding ME-CFS and the possible benefits, or adverse reactions, consuming dark chocolate has on ME-CFS?  ~ Posted by: MaschelleMEcfs, Feb 11, 2016

A few cautions 
Re: Did Probiotics Cure My Chronic Fatigue Syndrome?

Keep in mind that people with SIBO are generally advised to avoid prebiotics and that a subset of those with CFS have too much lactic acid in their systems and should avoid lacto containing probiotics. The advice for this group of people that I have read is to take mainly bifido containing probiotics. ~ Posted by: jevangelista, Feb 11, 2016

I would love to believe this… 

Re: Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)

I have had CFS for 23 years, so I don't really want to get my hopes up, but I really do hope we are this close. My next concern is whatever treatment they come up with may however be too expensive and/or not covered by insurance. ~ Posted by: curecfs, Feb 11, 2016

Dopamine and narcolepsy meds

Re: New Epidemics: The Possible Connection Between CFS/ME, Narcolepsy and PANS

"Dopaminergic Parkinson’s drugs, including L-dopa, are not thought to help narcolepsy (with the potential exception of the MAO inhibitor selegiline), although modafinil, the main stimulant treatment used in narcolepsy, is believed to act via dopamine receptors. (Modafinil also helps many CFS/ME patients, but is prone to “pooping out” over time.)"
I have N and believe cns stimulants like dexadrine work on dopamine. ~ Posted by: leapinn, Feb 14, 2016

Not all probiotics are good – get rid of Lacto-bacillus 

Re: A Commercially Available Probiotic Reduces Chronic Fatigue Syndrome's Inflammation-Should we offer this as a Treatment?

For my ME/CFS and IBS issues, I found that regular Lacto-bacillus bacteria (in yogurt and almost every probiotic formula) are DEADLY to my body. I have been using 2 main forms of probiotics. The first is pure BIFIDUS bacteria from Jarrow (no Lacto at all). The other is a really exotic probiotic from Germany called MUTAFLOR. Mutaflor has a really interesting history, discovered in WW1 in the stool of an orderly that never got sick, even though he cared for the sick. This combination, along with many supplements, has helped me regulate my IBS without making it worse. If you have uncontrolled IBS, switch from LACTO-based probiotics to BIFIDUS-based ones. I won't go back. Good luck everyone. ~ Posted by: Sandy10m, Feb 15, 2016

Some Help for CFS/Adrenal Fatigue/GAS/Hypoadrenalism Whatever you want to call It

Re: 10 Celebrities with ME/CFS
@Joan…Idk if you're still looking at this forum but I hope you are. My story w/ CFS is similar to yours. I work with a Naturopath in healing my CFS and have been successful so far. I have been working on healing for 6 months. I was very very sick with all of the CFS symptoms. I started my healing journey working with an alternative med doc who tried to heal my adrenal glands using naturally dissected thyroid and sex hormones. This treatment marginally helped my cognitive function and made my fatigue 100x's worse. The results of this protocol were transient. After a year of following that protocol with the alternative med doc I started working with a Naturopath at Clymer Healing Center in Quakertown PA. All the center does is heal CFS/Adrenal Dysfunction. He started me on a supplement called Adrenal Cortex Extract – ACE. As soon as I started the ACE I felt it work in my muscles. As I said I was very sick although on paper I was "super healthy" (according to mainstream docs). My muscles felt paralyzed, I felt paralyzed and at one point I had to be hospitalized bc the left side of my body did become paralyzed. The 1st few weeks of using ACE my muscles hurt. It felt like I was lifting weights every day and my muscles were sore from it. Of course I wasn't lifting any weights. I think the ACE somehow provided my muscles with what they needed. I had lost a lot of muscle mass bc of CFS/AD. After I had my ASI (adrenal stress index) test he added 1/4 tsp. licorice root. I never really felt much from this. None the less I continue to use it. I also eat a hypoglycemic diet. I'm really good about this. No sugar, caffeine or alcohol. In about 2 months of following this protocol my cognitive ability and memory improved dramatically. I had stopped dreaming several years prior and started again as well. I was glad that I was finally on the right track with healing. The only symptom that I wasn't so successful with was the fatigue. I recently decided to add pregnenolone. I've only been taking it for a few days. I take it before bed and I feel very happy when I wake up. This is promising to me bc my adrenal dys was so advanced that I have/had anhedonia. Having anhedonia is worse than the fatigue as far as I'm concerned. Anyway waking up and feeling happy the way I used to is great! Although the ND didn't tell me to take pregnenolone I am still going to continue on a 30 day therapeutic trial. I also started using a hydrocortisone cream. This really really helped my fatigue and it really really helps with the anhedonia, sleep, eyesight, muscles etc. too. I know the ND wouldn't be happy that I was using these but I had to keep my recovery moving in a forward direction. For the record I have spent 6 months healing my adrenal glands and I think that's why I have responded so well to pregnenolone. I had tried it several x's in the past without any improvement. Healing from CFS takes the right supplements and medications at the right time. ~Posted by: halfshellie, Feb 28, 2016

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