Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Metafolin is available in the UK from http://bigvits.co.uk/product.asp?pid=229&cid=&tid=&bid=27 This is a Solgar product, and it is the genuine Merck material.
Sublingual methylcobalamin in 1,000 microgram sublingual chunks is available in the UK from
http://www.solgar.co.uk/modules/catbuild/files/Methylcobalamin1000mcg30NuggetsE1950.htm This is also a Solgar product.
Dr. Myhill is not giving B12 or magnesium injections at the moment, pending her hearing in High Court to try to lift the restrictions placed on her practice by the GMC. But sublingual works O.K.
Yes, a multivitamin, multimineral with substantial but safe dosages of the essential nutrients (not RDA levels) is important.
Supplying amino acids can also be important, particularly methionine, serine, cysteine and glycine.
Support for the lipid membranes is important, too. The simplified protocol uses a phosphatidyl serine complex, which contains a range of phospholipids. This is also available in the UK from Solgar: http://www.solgar.co.uk/modules/catbuild/files/PhosphatidylSerineComplex500mg30TabletsE2803.htm
I hope this helps. It's important to be working with a physician while on this type of treatment, because a small number of people have reported serious adverse effects while on it.
rich and kyle,
thanks for the great info. So would i need to get a prescription for Metafolin from my doctor - as it seems to be a medicinal food. I will try and get a script tommorow. I can't seem to find any decent suppliers online for the UK.
So if I take Metafolin and Klye might I ask where you get the methylcobalamin b12 injects from? do you know if sarah myhill is back on the scene and able to supply them again? i used to get some b12 injects from her but i just realised its the rather dodged cynaocobalamin (cyanide bonded?)
So ideally if i start with: Metafolin, methylcobalamin (injection), high dose quality vitamin, amino acid mix tablets.
Do you think this is the best way to start rich?, I would like to give this another shot if I have been taking suboptimal type of folic acid.
My biggest problem is getting methylcobalamin injections i need to find a source!! arghhh
Kyle its great to hear you have had such a great improvement, I hope I am able to replicate some of your success.
Rich thanks for sharing all your knowledge with others, I want to give this another shot!
This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?
Yes, I am very happy to see these things coming together!
a) you've read what "asleep" quoted. "All samples were blinded, as mandated by the NCI and WPI institutional review board approvals. All experimental procedures were done by the same personnel, in the same physical laboratory space, under identical protocols.". No room for questions here. All samples were handled the same way. Cort, I do remember that Dr. Mikovits said they had to check samples taken at different times - but who said they didn't do so for healthy controls too? Not to mention that it would still not explain the difference. Including the difference between 9/18 patients positive for antibodies while none of the 16 healthy controls were positive for antibodies.The Cleveland Clinic tested 11 patient samples, but I don't recall any reference to them receiving any controls. It's not explicit in the paragraph you quote that CC was blinded to the CFS status of those 11 samples, although they certainly could have been.
The paragraph you quote says NCI received 100 samples, but the Virulence 2010 paper says 48 patient samples were sent to NCI. I don't recall any reference to NCI receiving additional patient or control samples, so the 100 number confuses me. The Virulence paper also says those 48 samples were collected by the Sierra Internal Medicine practice and sent to NCI. Is it possible that someone at NCI (who not a lab worker who performed the PCR) knew the patient status of samples? For example, Maureen Hanson was unblinded to the CFS status of her patient/control samples so she could present results but her lab workers are still blinded.
I just reread a couple of these papers yesterday so certain points are fresh in my mind. I find it very easy to get confused about sample numbers, tests run, etc. and I've paid closer attention than many patients I know. I think misunderstandings and misrememberings are quite possible without them being deliberate attempts to sow confusion and doubt.
"asleep" quoted the following sentence:The paragraph you quote says NCI received 100 samples, but the Virulence 2010 paper says 48 patient samples were sent to NCI. I don't recall any reference to NCI receiving additional patient or control samples, so the 100 number confuses me.
I think that you've answered your own question when you said "48 patient samples were sent to NCI", but the number of all of the samples sent to the NCI was 100. So - 52 of those samples were from healthy controls (which fits, because the WPI had more healthy controls in their study than ME patients). And none of the laboratory workers - not at the WPI and not at the NCI - knew about the health status of the individuals.Investigators at NCI received 100 samples from individuals without knowing their health status
Yes, it's easy to get confused. But before spreading misleading thoughts, espeically when these are negative thoughts which would get it more difficult to find that XMRV is the cause of ME if it is the cause, more cautious needs to be taken. Moreover, you have the number one source for answer very avaiable for you: Dr. Mikovits answers emails very frequently, sometimes within minutes from recieving them. Why won't you ask her before throwing a misleading and counter-productive arguments into the world wide web?
This is a very confusing statement, which seems meant to imply serious, biased flaws to the WPI's work.
Their work, a joint effort with the National Cancer Institute, and the Cleveland clinic, for this study, was Peer Reviewed for over 6 months,and then published by the one of the World's top 2 Scientific Journals.
Please clarify your comments: What "researchers" are you referring to, exactly what did they say, and based on what?
Please provide quotes, and clearly distinguish between them and your paraphrasing.
But before spreading misleading thoughts, espeically when these are negative thoughts which would get it more difficult to find that XMRV is the cause of ME if it is the cause, more cautious needs to be taken.
Until we know where the reservoirs are and can (hopefully) directly test them we are going to be frustrated by blood tests until we can find faster and easier ways to find this sucker.
I'm encouraged by the plans to do large scale testing on the blood supply/donors, but we need them using valid tests.
Dr. Houghton has been in touch with Dr. Mikovits at the Whittemore Peterson Institute and other experts in the field to ensure that the methodology of the study will be adequate to detect the virus if present.
We have an ambitious time line. The study will go before the U of Alberta ethics committee on July 23. If approved we want to have blood samples collected and analyzed by August 30th so that we are in a position to use whatever information we find to apply for a bigger grant to do more detailed research. The grant application deadline is September 15th, 2010.
Our protocol includes an assistant who will go to the participant's home or work (or some other location if preferred) to draw the blood. We hope this will allow the severely ill to participate as the blood can be drawn from the bedside if necessary.
We are looking for 50 subjects with ME/CFS (meeting Canadian Consensus Criteria) and 50 healthy people matched by age and gender.
Alberta researchers hoping to prove once and for all a debilitating syndrome is viral in origin are launching an ambitious study in Calgary and Edmonton.
Outbreaks of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have been documented since 1930, but have no known cause or accepted diagnostic tests.
Recent research has argued both for and against the theory that ME/CFS, which causes exhaustion, sleep disorders, cognitive problems, and muscle and joint pain, is linked to a retrovirus called XMRV, a relative of HIV.
Dr. Eleanor Stein, a Calgary ME/CFS specialist and researcher, said a study launching in Calgary will look to confirm if the syndrome is in fact linked with the retrovirus, which is tricky to find and treat.
The retrovirus actually fits itself into our own DNA so that when our DNA replicates, the retrovirus replicates with it, she said.
There is no known treatment for ME/CFS and it is estimated more than 300,000 Canadians may be affected.
Stein will be joined by Dr. Lorne Tyrrell, founding director of the Li Ka Shing Institute of Virology in Edmonton, and Dr. Michael Houghton of the University of Alberta, who holds the Canada Excellence Research Chair in Virology, for a preliminary study next month.
Approximately 100 participants 50 diagnosed with ME/CFS and 50 healthy are needed between Calgary and Edmonton.
The subjects will answer questionnaires and have blood drawn ideally by the end of September, said Stein, so the research team has enough time to gather data and apply for grants early next year to fund a larger study.
Patients severely affected by ME/CFS are invited to join the study as well, as the team can draw blood at their residences.
Interested Calgarians are asked to call 403-287-9941 and Edmontonians 780-492-8415.
Maybe Lannie or Cort can help me understand this. If WPI cannot confirm a sample is truly negative, then the Blood Working Group study is completely useless. But on the other hand, Dr. Mikovits seems to be completely confident in the negative results of testing of healthy people. This reads like a contradiction - either the positive/negative results are clear and reliable, or they are not. I don't understand how it can be both. Can anyone help me out?
I don't understand this either. Is Dr. Mikovits saying that patients cannot make antibodies to XMRV only? Or that a severely ill patient cannot make antibodies to lots of pathogens? The latter would suggest an AIDS-like presentation with the immune system completely unable to do its job. I know we have lots of co-infections, but that's different from an immune system unable to function by making antibodies. If Dr. Mikovits is saying patients can't make antibodies to XMRV alone, why would that be? Do they understand the mechanism for why the immune system would be unable to mount a response to one pathogen but not others?
But it's an interesting question - "why the immune system would be unable to mount a response to one pathogen but not others?" - so I've pondered it and come up with a hypothesis...
Rich and Cort,
What great info! The comments string to this post was amazing.
I spent about an hour reading the references about "Augmenting Glutathione in CFS Patients" and was fascinated - it all made sense to me. Before starting Ampligen I was getting Glutathione shots I.M. for a few months, and prior to that I drank that whey protein drink religiously. Then I heard Cheney do a 180 degree turn on the whey protein and glutathione supplementation, contradicting everything he'd said for years when he was promoting the whey powder, (and some say earning six figures doing it) and I ended up totally confused. I got a few laughs about it in my blog post some months back entitled "The Ampligen Supremacy", where I described how foolish I felt mixing up little batches of "Imuplus" for years, spraying powder and this wallpaper glue type substance all over the kitchen, only to hear Cheney years later advise against it, saying essentially it was bad for us.
Can you help me understand where the disconnect is? I always seemed to feel better with Glutathione injections, but Cheney's comments against it have me wondering. Thanks!
I'm sorry to hear that the methylation treatment you tried did not bring you more benefit. Perhaps using Metafolin (methylfolate) rather than folinic acid would be more helpful. It is available in the UK. Some people have difficulty converting folinic acid into methylfolate for genetic reasons. Other issues that can limit the effectiveness of methylation treatment are deficiencies in amino acids which are needed to feed the methylation cycle and related pathways, and deficiencies in the vitamin and/or mineral cofactors for this part of the metabolism. HPU/KPU is another possibility, since it depletes B6, zinc, manganese, biotin and other nutrients. Also, people who have Lyme disease or mold illness appear to need separate treatments for these in addition to the methylation treatment.
I was not present at Dr. Mikovits's talk, so I don't know exactly what she said, but my impression from the reports as well as from speaking with her a couple of times in the past is that she is suggesting that combining treatments may help. I don't think there is much experience with this yet. I think she is projecting from the genetics and biochemistry, as I am also trying to do.
I'm sorry that all of this has not yet been worked out and tested. All we can do is to start from where we are. I know it's frustrating.