From Our Readers – Comments & Suggestions 02-11-09

Dr. Jason’s Study Applying the CDC’s CFS Case Definition

I want to call to your attention a study I learned about today via the Co-Cure Listserv’s ME/CFS and Fibromyalgia Information Exchange Forum. It is a study that Dr. Leonard Jason, et al. conducted that concluded “38% of those with a diagnosis of a major depressive disorder were misclassified as having CFS using the new CDC definition.” – MEMavis

Note: to read the abstract & link to the full text article, click here.


“A Rare Moment in CFS Research “– Rich Van Konynenburg’s Comments

Dr. Sarah Myhill and coauthors have just published a paper on mitochondrial dysfunction in CFS. They found that there is mito dysfunction in CFS, and that the degree of this dysfunction is correlated with the degree of disability of PWCs.

In my opinion, this is a landmark development in CFS research. It shows that the fatigue in CFS is traceable to problems in the basic power plants of the cells of the body. This should draw the attention of the CFS research community to the fundamental biochemistry of metabolism, and it should also be a powerful bulwark against the wrongheaded view that CFS is a psychiatric disorder, which is particularly dominant in the UK.

The next step is to establish what is causing the mito dysfunction in CFS. There are some competing ideas about this among Dr. Cheney, Professor Pall, myself, and others, and hopefully we will be able to shake them down and see which one or ones hold up to scrutiny soon.

As many of you know, my view is that the mito dysfunction is caused by glutathione depletion in the mitochondria, and I believe that this leads to the whole range of problems that Dr. MacLaren Howard, one of the authors of this paper, has found in the mitochondria of PWCs with his lab testing, now at Acumen Lab in the UK.

There is now good evidence that treating to correct the partial block in the methylation cycle will raise the glutathione levels in CFS, as it does in autism, and recently we (and I) have been hearing from a small number of PWCs who report that after methylation cycle block treatment their energy levels are coming back up, and some have been able to return to work. This can take many months, but it is definitely happening, at least in a few cases so far. We need many more cases to draw conclusions about this, but so far, so good.

It is rare that a really worthwhile paper about CFS research comes out, and in my opinion, this is one of those rare moments! – Rich Van K


The Mitochondria Tests at Acumen Lab – If You Live Outside the UK

Re: The ATP test for ME/CFS that Drs. John McLaren Howard, Sarah Myhill, and Norman Booth now offer.

I have sent blood samples from Minnesota a number of times to this lab [UK-based Acumen Lab]. They have gotten there in different amounts of time, but each time the blood has been acceptable to John McClaren Howard at Acumen. Acumen is all the way down in Cornwall, so it is not exactly like sending it to London. I use FedEx. It is very important to get the address from Dr. Howard for international shipments. You cannot send FedEx to a P.O. box on an international shipment. I think it is best to e-mail Dr. Howard [E-mail:] and let him know what you want to do. – Chris


A Good CFS General Info Book …

… I think Chronic Fatigue Syndrome for Dummies could be the best “starter” book for people who have been hit with CFS. It can also be helpful for people who already know a lot, because it covers more topics than other books do. For example, topics like how to do an elimination diet, helping children with CFS, how to discuss CFS at work, and more.

My one objection to it is the coverage of exercise. They only touch briefly on post exertion malaise, and then fail to explain in the different exercise sections how to chart reactions and avoid problems. My recommendation is to ignore the exercise advice until after [you] have read Bruce Campbell’s stuff about exercise. – Andrew

Note: See for example Dr. Campbell’s free self-help modules on “Finding Your Energy Envelope,” Part 1 and Part 2.


Magnesium Helped My Restless Legs

I was diagnosed with PLMD [periodic limb movement disorder], which reading between the lines of what the sleep clinic was saying is a milder version of RLS. I am taking 5 magnesium taurate pills a day and it is very helpful… There are several different kinds of magnesium – they are all OK except for magnesium oxide which is a really cheap one that won’t absorb. You need to gradually increase your magnesium to bowel tolerance (i.e., diarrhea), then back off one and that is “your” dose.

You also need to make sure your gut is working properly so you are absorbing the magnesium. This might involve taking probiotics, digestive enzymes and betaine hydrochloride (Betaine HCL); also a gluten free, dairy free diet if you are sensitive to those. – Caledonia


ME/CFS is an Organic Disorder, Not Mental

Re: Research by Michael Maes indicating ME/CFS has “a genuine organic cause”

This review article is significant because it is published in a psychiatry journal, and the psychiatric community has often been skeptical that ME/CFS is an organic disorder. Hopefully this will help a lot of the skeptics to realize that there is something physically wrong with ME/CFS patients. Much of the groundbreaking research on the pathways described here has been done by Professor Martin Pall. – drewmanman


MSM Helped Me

I lived with the symptoms of Fibromyalgia for many years. None of the prescriptions I tried had any effect on the pain and inflammation. I was forced to quit working and at times it was a major effort just to get up in the morning. A dentist recommended that I try taking a nutritional sulfur supplement (MSM). I was extremely skeptical. I have tried numerous nutritional supplements and have never noticed any benefits from them. I started taking the MSM [short for methylsulphonylmethane].

Within just a few days, I noticed a major difference in my pain and inflammation levels. I’ve found that by taking the MSM on a daily basis, I was able to get back to my normal life. I would recommend the MSM for anyone who is living with the chronic pain and inflammation from Fibromyalgia. … – gotmsm1


Native American IBS & Colic Aid

Re: Article suggesting peppermint should be a ‘first line of defense’ for IBS

I’m of Native American heritage and have used peppermint for IBS like forever. My mother taught me to use it. We used a mild slightly sweetened tea, to administer to babies with colic. Always provided great relief. Works great for adults too… natural is better. – Dobbyruth


ME/CFS & Viral Testing

Re: “UC San Francisco to Launch Center for Viral Diagnosis & Discovery in Early 2009”

I too spent 13 years with re-occurring (every 2 months) viral meltdowns and brain inflammation until I collapsed and my immune system gave out. Even then the team of specialists that were testing me failed to run viral tests for the most common likely viruses (EBV, Varicella, HSV6, CMV) and also said there wasn’t anything they could give me other than IV-IGG.

If I hadn’t called and pleaded for an appointment with Stanford (with nearly my last breath), I wouldn’t be alive today. Stanford ran the viral panels immediately, began treatment the same day. I think it is great that UC San Fran will be opening this center, but it is NOT that hard for ANY Doctor to simply run the viral panels and use this as a standard diagnostic approach. I think the problem is most Doctors don’t want to deal with the issue of viral illnesses and don’t keep up with the research on them – just like most don’t want to recognize let alone treat CFS/ME.

This needs to be mandatory in medical school curriculums and ongoing training. It is a just plain tragic that Doctors can pick and choose to ignore – be ignorant of – viral illnesses and CFS/ME. Me – I am still hopeful I will eventually recover but I have a long road ahead now given how ill I became before I got a diagnosis and I have permanent neural damage that may never recover. I pray – every day – that NO ONE has to go thru what I did to get a SIMPLE diagnosis AND treatment. ALL GPs and Internists should be able to run basic viral panels. – frosty mocha


DePaul Program for Shut-Ins

Re: “DePaul Reports on An Alternative Way to Help People with ME/CFS, FM, and MCS”

I dearly wish a university in North Texas would start something like this. As someone who has been shut-in with CFS for 20 years, it would mean the world to me. – Sick Kitty
Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “From Our Readers – Comments & Suggestions 02-11-09”

  1. Sandy10m says:

    Okay, so where do we find out about this mysterious “methylation cycle block treatment”? For those of us who are tired of being tired, what do we do to fire up our mitochondria? THAT would be valuable information. Please let us know where to find this.

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