The HFME e-newsletter - February 2011

[Guest guest]

Hello and welcome to the 'Hummingbirds' Foundation for MyalgicEncephalomyelitis' e-newsletter for February 2011We hope this past month has been treating you and yours as well as possible.It has been a very busy month for HFME. The new projects we have to tellyou about this month are:1. A new must-read paper: Symptom-based management vs. deep healing in M.E.2. A new paper: Recognising and managing healing reactions in M.E.3. A new paper: What if vitamin/mineral/protocol 'x' didn't work for me?4. A new paper: Why research and try treatments when some groups claim aM.E. cure is coming soon?5. A new paper: Additional health testing and M.E.6. A new paper: A misdiagnosis letter for 'CFS' misdiagnosed (non-M.E.)patients7. New recommended articles by other authors------A new must-read paper is available: Symptom-based management vs. deephealing in M.E.M.E.is a difficult disease to treat. The idea that you would try a lotof different treatments one by one, discarding those that make you feelmore ill and continuing with those which decrease symptoms ordisability, seems like a 'no brainer.'Unfortunately, due to something known as a 'healing reaction' theproblem is not at all that simple. Some of the treatments which may havelittle or no effect or make you feel more ill at first may in fact bethe best ones for you. It is also possible that some of the treatmentswhich make you feel better very quickly are the ones that you shouldstrictly avoid.See: http://www.hfme.org/treatmentconcepts.htm#698360769------A new paper is available: Recognising and managing healing reactions in M.E.How do you tell the difference between a healing reaction and an M.E.symptom or relapse? How do you tell the difference between a healingreaction and a bad reaction to the treatment? How can healing reactionsbe minimised?See: http://www.hfme.org/treatmentconcepts.htm#698361926------A new draft paper is available: What if vitamin/mineral/protocol 'x'didn't work for me?What constitutes a fair, reasonable or exhaustive trial of an essentialnutrient? What factors might make a trial unreliable or incomplete? Whyand how should trials on nutrients differ to those on symptom-relievingdrugs?See: http://www.hfme.org/treatmentconcepts2.htm#703252345------A new paper is available: Why research and try treatments when somegroups claim a M.E. cure is coming soon?Wildly optimistic hope is essential for living with something as awfulas M.E. but so is critical and logical thinking and genuine advocacy ifwe're ever to really improve the terrible situation we find ourselves infor ourselves and for all the future M.E. patients to come.Hope and critical thinking are not mutually exclusive, and we really doneed both.See: http://www.hfme.org/treatmentconcepts2.htm#703252376-------A new draft paper is available in Word format: A misdiagnosis letter for'CFS' misdiagnosed (non-M.E.) patientsThis letter can be used by those who do not yet have a correctdiagnosis, as well as by those who do. Rejecting your 'CFS' misdiagnosisis so important for your health and wellbeing and it is also importantto let your friends and family know of this change.(To have family understand that all the crappy 'CFS' and 'ME/CFS'stories aren't about YOU, really is so helpful, for a start!)This document contains both the HFME misdiagnosis letters.See: http://www.hfme.org/Word/Misdiagnosis_letter_for_ME_patients.doc------Other new recommended links and papers1. The Story Of StuffA 20-minute animation of the consumerist society, narrated by AnneLeonard. Off-topic but highly recommended.See: http://www.storyofstuff.com2. Missed Diagnoses Myalgic Encephalomyelitis & Chronic Fatigue SyndromeSecond Edition by Byron Hyde MDThis is a NEW revised and expanded edition, and is available from Lulu.See:http://www.lulu.com/product/paperback/missed-diagnoses-myalgic-encephalomyelitis-chronic-fatigue-syndrome-second-edition/10255089See also: http://apps.facebook.com/causes/posts/6576223. Re: At last, I have discovered the secret of 's 14 lost years,Daily Mail, 12 February 2011 by Dr GreensmithEsther Rantzen now says her daughter 'probably' didn't have ME, afterall. But those of us familiar with M.E. know that there is no 'probably'about it, and that a person who improved through CBT and GET and theLighting therapy scam couldn't possibly have had M.E. We also wont beholding our breath for Esther to apologise for all the harm herignorance and mindless self-promotion have caused! Such an apology wouldbe very appropriate however.'s piece links to the original story as well."If it turns out that Wilcox's chronic illness is Coeliac (Atlast, I have discovered the secret of 's 14 lost years, Daily Mail,12 February 2011) and that she might be cured, or at least improved, bya gluten free diet, it will be great news not only for her but M.E.(Myalgic Encephalomyelitis) sufferers, with whom she has been associatedfor 14 years."See: http://www.mefreeforall.org/index.php?id=26944. Think Before You Pink by Allyson Drosten-Also off-topic, but recommended."Pinkwashing: a term used to describe the activities of companies andgroups that position themselves as leaders in the struggle to eradicatebreast cancer while engaging in practices that may be contributing tothe rising rates of the disease.Many corporations today run campaigns to raise money for breast cancerawareness, which is great. But where is that money going? Avon claims tobe the largest corporate supporter of the breast cancer cause in the US.Estée Lauder's Annual Breast Cancer Awareness Campaign, known as "ThePower of a Pink Promise" and Revlon's 5K Run/Walk are high-profileefforts to raise money for the cause. The problem is that all 3 of thesecompanies opposed a California bill that would require cosmeticcompanies to disclose their use of chemicals linked to cancer or birthdefects. In a 2005 report including a list of "Top 20 Brands of Concern"based on toxicity, the Revlon and Estée Lauder brands were ranked 8 and9 on the list, respectively. None of the three companies have signed theCompact for Safe Cosmetics, a pledge to remove hazardous chemicals andreplace them with safer alternatives. Instead, they fight to keep thecosmetic industry unregulated."See: http://undergroundwellness.com/think-before-you-pink/-------Other recent/major HFME papers:1. XMRV, 'CFS' and M.E.http://www.hfme.org/xmrvcfsandme.htm2. M.E.: The shocking diseasehttp://www.hfme.org/metheshockingdisease.htm3. International M.E. expert disputes that 'CFS' XMRV retrovirus claimhas relevance to M.E. patientshttp://www.hfme.org/xmrvpressrelease.htm4. Liposomal vitamin C and M.E.http://www.hfme.org/researchvitamincandme.htm#654257045-------Ongoing HFME projects1. The Hummingbirds' Foundation for M.E. is setting up two new memorialpages. One for M.E. patients and one for all those patients misdiagnosedwith 'CFS' who have diseases other than M.E. If you would like a friend orfamily member to be included in this memorial list, please see the HFMEmemorial lists page at http://www.hfme.org/mememoriallist.htm2. Donate 'free' money to M.E. advocacy if you are a new customer at theiHerb or VRP online supplement and vitamin shops. For more informationplease see: http://www.hfme.org/donatetohfme.htm3. Join the Facebook HFME group.See: http://www.facebook.com/group.php?gid=81602111102There is also a HFME FB page.4. Join the M.E. cause on Facebookhttp://www.causes.com/causes/220295. Grey M.E. awareness ribbon designs - prototypes available to be viewedSee: http://www.facebook.com/album.php?aid=21324 & id=119522608064036 & ref=mf6. A new HFME M.E. patient card mailing listSee: http://www.hfme.org/thehfmemecardsproject.htm----------That's it for this month.I hope you've found some of the new papers on treatment useful.By the way, If you're one of those that prefers to stick to drug-basedmedicine in an unwavering way (as is your prerogative) you may prefer toskip the above new HFME information on treatment. But I hope you canunderstand that some patients do find such information useful and thatit is these patients these papers are aimed at and that disagreementsabout treatment should not be allowed to harm our shared political goalsfor M.E. You'll also be pleased to know that all the new treatmentpapers planned are almost finished and that various new political paperswill soon be released by HFME.Best wishes everyone until next month,Jodi Bassett (and the HFME team)-----This month's quotes:"Do something to improve your health. I think we should leave no stoneunturned in our search for better health. I also believe that you getout of your body what you put into it. Your body will respond to yourefforts to improve your health. The time to start is right now. Anotherold saying: "If not now, when? If not here, where? If not you, thenwho?"" Saul PhD"Good nutrition and vitamins do not directly cure disease, the bodydoes. You provide the raw materials and the inborn wisdom of your bodymakes the repairs. Someday healthcare without megavitamin therapy willbe seen as we today see childbirth without sanitation or surgery withoutanaesthetic." Saul PhD.'Modern medicine is not scientific, it is full of prejudice, illogic andsusceptible to advertising. Doctors are not taught to reason, they areprogrammed to believe in whatever their medical schools teach them andthe leading doctors tell them. Over the past 20 years the drugcompanies, with their enormous wealth, have taken medicine over and nowcontrol its research, what is taught and the information released to thepublic.' Abram Hoffer M.D."Orthomolecular treatment does not lend itself to rapid drug-likecontrol of symptoms, but patients get well to a degree not seen bytranquilizer therapists who believe orthomolecular therapists are proneto exaggeration. Those who've seen the results are astonished." AbramHoffer, M.D., Ph.D.'I have to laugh when people ask me if I do alternative, herbal,acupuncture or holistic medicine. 'No,' I reply. 'We do state-of-the-artmedicine. In other words, we find the biochemical, nutritional andenvironmental causes and cures rather than blindly drugging everything.Sure, herbs are gentler, safer and more physiologic than drugs andholistic medicine attempts to incorporate many diverse modalities, etc.But there is no substitute for finding the underlying biochemical causesand cures. This is real medicine. This is where medicine should andwould have been decades ago, if it had not been abducted by thepharmaceutical industry.' Dr Sherry -----HFME E-NEWSLETTER NOTES:1. 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