The HFME e-newsletter - March 2011

[Guest guest]

Hello and welcome to the 'Hummingbirds' Foundation for MyalgicEncephalomyelitis' e-newsletter for March 2011We hope this past month has been treating you and yours as well as possible.It has been another very busy month for HFME. The new projects we have to tell you about this month are:1. A new paper: Finding a good doctor when you have M.E.2. A new paper: Testing for M.E.: Plan D3. A new paper: Deep healing in M.E.: An order of attack!4. A new paper: Toxin avoidance and M.E.5. A new short text: Some informal comments to 'ME/CFS' advocates on the PACE trial sham in the UK------A new paper is available: Finding a good doctor when you have M.E.Sections include:a. The difficulties in obtaining an accurate M.E. diagnosis are not due to a lack of appropriate science or tests.b. Testing for M.E. Plans A, B, C and Dc. Links to some of the most well-known doctors knowledgeable about M.E.d. Educating a willing and intelligent doctor about correct M.E. diagnosise. Different doctors for diagnosis and for treatment - an important distinction!f. Finding a doctor that can devise an individualised orthomolecular / holistic / environmental medicine program for you to help your body healg. Websites which can help you find a doctor specialising in orthomolecular / holistic / environmental medicine near youh. Quick diagnosis is key with M.E.i. Avoiding overexertion in the early stages of M.E. is absolutely ESSENTIALj. Calling all good doctors! Add your name to the future HFME international good doctor's list.See: http://www.hfme.org/findingagooddoctor.htm------A new paper is available: Testing for M.E.: Plan DDiagnostic tests for M.E. exist, as described in Testing for M.E. On a purely scientific level, we have more than enough information to diagnose patients with M.E. using objective tests and by taking detailed case notes and conducting a detailed physical exam etc. within just a few weeks of the onset of the disease. If the will and the funding were there, doctors could right now be given the information to diagnose all cases of suspected M.E. Scientifically, it would be no more difficult to do this with M.E. than with other diseases such as Multiple Sclerosis or Lupus.A series of tests can confirm or eliminate a diagnosis of M.E. If all tests are normal then a person does NOT have M.E. M.E. is no more difficult to diagnose through using a series of tests than MS. In fact, it has been suggested that diagnosis of M.E. is significantly less difficult and more reliable than that of MS.The problem is not that tests for M.E. don't exist. They do, but doctors – and many patients – are unaware of this. The information on testing is not generally known and accepted due to the nefarious influence of political and financial vested interest groups. There are overwhelming financial and political incentives for researchers to IGNORE the evidence on the diagnostic tests for M.E. in favour of the bogus and untestable `CFS' (or `subgroups of `ME/CFS') construct, and so on. Thus doctors who gain their understanding of M.E. from such flawed research – as almost all do – wrongly believe that the disease cannot be tested for.Despite the existence of these tests, the unfortunate reality is that many people who suspect they have M.E. do not have access to the appropriate tests or to doctors who are able to make a diagnosis. This paper describes the ways in which patients seek a diagnosis in practice, and offers a `Plan D' for patients who are forced to diagnose themselves.Several years in the making I'm happy to announce that this paper is finally complete.See: http://www.hfme.org/testingformepland.htm------A new paper is available: Deep healing in M.E.: An order of attack! by Jodi Bassett and Bea FawcettThe paper 'A quick start guide to treating and improving M.E. with aggressive rest therapy, diet, toxic chemical avoidance, medications, supplements and vitamins' looked at which treatments are the most important in M.E. This paper examines in what order all the different treatments and management techniques are best implemented.Fill-in charts are provided throughout so that patients can use this paper to track their own progress, if desired.The (excellent) idea for this paper came from Bea Fawcett who commented that patients needed a step-by-step very simple explanation of how and when to do each part of treatment with charts that can be filled in as you go, as we're all so ill and easily overwhelmed with information.See: http://www.hfme.org/theorderofattack.htm------A new paper is available: Toxin avoidance and M.E.Chemical sensitivities are common in Myalgic Encephalomyelitis and Multiple Sclerosis, and many other diseases. Symptoms provoked by chemical sensitivities can range from mild to very severe. Modifying your environment and changing the types of products you buy is essential if you have M.E., or any other disease causing chemical sensitivities or poor liver function. This paper lists some of the products to avoid and some of the best replacement products.See: http://www.hfme.org/toxinavoidance.htm-------A new short text is available: Some informal comments to 'ME/CFS' advocates on the PACE trial sham in the UK"The 'ME/CFS' definition is just another wastebasket definition and is not a M.E. definition. It selects a mixed patient group just like the 'CFS' definitions do, it just has an extra tiny bit of some of the least important aspects of M.E. thrown in. Using the term M.E. but defining it using the 'ME/CFS' definition as many are doing now is even worse. This is all about definitions, not mere terminology!""'ME/CFS' defending and promoting is not M.E. advocacy, it's anti-ME advocacy. It is making things worse for M.E. patients, and all those misdiagnosed with 'CFS' who do not have M.E. and don't need GET either, as well.""Think before posting your next 'ME/CFS' 'research' or 'advocacy' post... 'ME/CFS' research and advocacy helps nobody. None of the patient groups involved, at least. It helps our abusers plenty!"Be very wary of groups which use the term M.E. yet are peddling the same old 'CFS' and 'ME/CFS' nonsense. The term M.E. is only correct and helpful when applied to an actual M.E. patient group and facts about genuine M.E. Some of the worst anti-advocacy groups are now wrongly using the term M.E. in their names and elsewhere.See: http://www.hfme.org/bitsandpieces.htmSee also: http://www.hfme.org/problemswithmecfs.htmand http://www.hfme.org/whobenefitsfromcfs.htm-------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.htmSee also:http://www.hfme.org/whobenefitsfromcfs.htmhttp://www.hfme.org/warningoncfsresearch.htm3. International M.E. expert disputes that 'CFS' XMRV retrovirus claimhas relevance to M.E. patientshttp://www.hfme.org/xmrvpressrelease.htm4. Symptom-based management vs. deep healing in M.E.http://www.hfme.org/treatmentconcepts.htm#698360769-------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 useful.Best wishes everyone until next month,Jodi Bassett (and the HFME team)-----This month's quotes:"People's ability to detoxify certain substances is as unique as their fingerprints or their face. There is as much as a 500 fold different in people's detoxification abilities with different chemicals." Dr Sherry "There is a principle which is a bar against all information, which is proof against all argument, and which cannot fail to keep man in everlasting ignorance. That principle is condemnation without investigation." Paley (1743-1805)Let no one who has the slightest desire to live in peace and quietness be tempted, under any circumstances, to enter upon the chivalrous task of trying to correct a popular error. Thoms, deputy librarian for the House of Lords, c. 1873Results are all that matter to me. The natural treatment of illness can be accomplished safely, inexpensively, and effectively. We've all been taught that anything that is safe and inexpensive cannot possibly be really effective against "real diseases." It is time to rethink that, and especially to see for yourself what works. Saul PhD-----HFME E-NEWSLETTER NOTES:1. If you'd like to unsubscribe, just reply to this newsletter (or emailHFME the word 'unsubscribe' and quote the number 19). To changethe email address your newsletter is sent to, please quote this same number.2. Permission is given to forward this email (unedited). Please delete thee-mail address from the top of the email, however. Thank you.3. 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