Please post your concrete, actionable ideas regarding advocacy.
I have severe ME and do not pass your criterion test https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636 MY symptoms are thus.... Not passing Section 3 ---------------------------- I have the flu response to exertion very clearly and strongly after a very small amount of activity. I did get nausea at the start but not much. My fluish is not a virus its a reaction to activity. I tend to not get viruses when people around me do. I am very sensitive to anything that requires energy eg sound light etc but I have not experienced any other kind of sensitivity. It would be better to talk about needing to wear earplugs and blindfolds to avoid stimulation or energy usage as a criterion. People dont come out of the gym asking for a pair of earplugs or with the flu. Also the reaction to overexertion peaks 3 days after the activity. This is universal why not have this in? Pain criterion ------------------ I have very little pain. Occassional headaches yes behind the eyes, but people say pain is an essential symptom & cut me out when I have incredibly clearly fluish symptoms in response to activity of any sort. ❏ Headaches : such as chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches ❏ Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non inflammatory in nature and often migrates. In other words have generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain. Definitions: Hyperalgesia : increased sensitivity to pain Myofascial : pertaining to a muscle and its sheath of connective tissue, or fascia Hope this helps Michelle Wyatt
Good day ME Advocacy members, My belief is that ME/CFS/FM will be treatable in the near future. There are simply too many people suffering with this illness for it to go on like this. More funding for research can make a difference. One of the cornerstones of research is being able to find suitable candidates for their studies. It’s been far too long that we haven’t had a global registry for CFS/ME/FM. I am reaching out to you regarding a new initiative. I’ve started that global registry: http://www.cfsme-registry.info and I invite you and your members to sign up (zero fees). I am actively contacting CFS/ME/FM associations and support groups, researchers and doctors now. If you’d like to discuss anything, feel free to email me: Michael.Lapenna@cfsme-registry.info. I hope you can inform anyone you know who has CFS/ME. Thank you and take care.
Petition against 2011 PACE trial http://my.meaction.net/petitions/pace-trial-needs-review-now
very few people are aware that a 19% decrease in social security disability benefits is slated for 2016. we need to contact our elected officials about this issue, but it's very difficult to get the word out. your network has a large number of people who are probably effected by this major decrease in funds. please consider setting up a mass mailing for this problem. thanks!
Would it be feasible to stand across the roads leading to the capitol building? If so I was wondering if any healthy ppl and less severe ppl with ME would want to stand together across the roads leading to the capitol building during a congressional sessions and hold signs. Dont know how security is. Anyone familiar with the area surrounding the capitol think this is logistically possible?
Hello. My name is Kristina and I have ME. I live in the UK and I recently started a petition against the proposed name change from ME to SEID. If you could feature it I think that it would have a lot more impact. You can find it at https://www.change.org/p/institute-of-medicine-cease-calling-for-a-change-in-the-name-of-me-to-seid
Make the petition international so that non US residents can sign. US often leads the way in research so it is important for all ME sufferers around the world to have a say.
I am not able follow much, and participate very little any more. But I caught the short clip of Lucy Bateman saying it's ok to donate blood. If you are able, run with that quote while you can, in as many patients and wheelchairs as can be rented/loaned/donated! (Major metro areas for most attention.)
Make sure you listen and call into the show Monday on NPR: Canary in a Coal Mine (Jen Brea) February 13 at 1:18pm · Edited · Hi everyone! I will be appearing Monday morning live at 10am ET/7am PT on the national NPR show, On Point along with Dr. Ellen Wright Clayton, chair of the IOM committee, Dr. Derek Enlander of Mt. Sinai and Dr. Daniel Neides of the Cleveland Clinic. The show will discuss Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and the new name and definition for Systemic Exertion Intolerance Disease (SEID). It is a one hour, live call in show, so you can call in with your questions or comments during the broadcast. Here is how to call on point: http://onpoint.wbur.org/contact-on-point You can listen to the live broadcast online here: http://www.wbur.org/listen/live Or find the broadcast time on your local station here (some times are live, some are re-broadcasts): http://www.wbur.org/syndication And here is how you can listen online after the show: http://www.npr.org/podcas…/510053/on-point-with-tom-ashbrook
It would be nice to have a sample letter for people to use for sending out to local media outlets. Maybe create a press packet. Something not too technical or long that newspapers or other media outlets might actually use.
I had an idea for a video to draw attention to the fact that few people and many doctors still do not take this disease seriously, especially when it's referred to as Chronic Fatigue Syndrome. If anyone knows how to get this started, all suggestions are appreciated. There are some very popular youtube videos with pictures of dogs with signs hanging around their necks with statements about things the dogs did wrong.(e.g. A dog sitting, surrounded by reams of toilet paper with one that says "I TP the house when mom goes out." - they're much funnier than that). Perhaps we could have people in doctor attire (white coat, steth) who, one by one, would stand there, deadpan, with signs around their necks saying things like, "I told my patient to just drink coffee." Or, "I told my patient to go see a therapist." At the end would be a statement as to what CFS/ME really is and where to get info.
Many CFS patients (unless completely misdiagnosed) ARE Me Patients. CFS patients are not as severely ill with inflammation of the brain and spinal cord. Already the fMRI's at Stanford are indicating different severity levels in connection with how compromised the brain is on the images. Many illnesses have stages and severity or even types. Lupus, MS, Parkinson, ALS, cancer, etc. There are 10 different types of breast cancer but all are breast cancer. Even ME patients don't seem to have the illness come on the exact same way and the theory being it can be brought on by different viruses, toxins, illnesses, etc. or any combination of these. ME is of course inflammation of the brain and spinal cord and there is no doubt more than one way to inflame the Central Nervous System. I have been diagnosed with CFS but most definitely suffer from post exertion malaise/fatigue. I may not be able to bathe for 3 days after a doctor appointment and can take up to two weeks before getting out again. Several times I went up to two weeks without being able to bathe. But I also know that I am not bedridden or in a wheelchair and can still drive on a good day so an ME diagnosis was not given to me. Don't count us out of the ME/CFS fight because we are helping to fund documentaries and do all we can to educate and inform family, friends and our own health care providers.
There has been a recent research paper (Stanford study from Dr. Montoya's lab, brain abnormalities for CFS) that quite a few news sites have picked up on. During some FB discussions some of the main criticisms are the stock photos used that trivialize the severity of this disease, and also verbiage mentioning hypochondria or the disease not being real ( that term was used from a quote by Michael Zeineh, lead author of study). 1) It would be nice if we have a project to collect photos that would represent the moderate to severe ME patients. I am guessing we would need waiver statement to allow free use of the photos for the media. And the photos would need to be of high quality and visually captivating/appealing. It would also be a great resource for the doctors and researchers to use as reference when they release their info to the press... (eg. go to this link for access to free pro-photos representing ME patients.) 2) Another item that would be useful for doctors and researchers are guidlelines for when speaking to the public/media. To provide terminology that validates this disease and what terminology/phrases that are a detriment to public perception which would dwindle support for ME research (mentioning hypochondria, psychosomatic, not a real disease).
Dear Friends, PwME, I just signed this petition -- will you join me? Governments must comply to WHO ICD10 G93.3 To: All associated members of the World Health Organisation The petition is really important and could use our help. Click here to find out more and sign: http://www.avaaz.org/en/petition/Governments_must_comply_to_WHO_ICD10_G933/? Thanks so much, Aeon.
http://energycommerce.house.gov/cures It might be too late to reply to their request for input, or maybe the community has already tried to tap into this committee...but if not too late, or already done--could we do a group letter or letter campaign to call attention to how the current infrastructure for providing diagnosis and treatment for the ME/CFS population has failed. Everything from CFSACs failure to act on recommendations, CDC refusing to update content and acknowledge PEM, lack of NIH funding year over year, IOM, P2P, FDA not approving ampligen, how Ian Lipkin can get a 31 million dollar NIH grant for translational research, yet has been refused funding twice to study the microbiome in ME/CFS--leaving patient to have to fund the 1 million+ dollars for the study. Seriously, ME/CFS is a posterchild for a system that does not work! Unfortunately I don't have recommendations for solutions except maybe using ME/CFS as a case study of how NOT to provide 21st century care let alone cures.
hi, I'm newly joined and am not quite sure if spreading the word on research is what you do but there's an opportunity for 2 ME biomedical charities (UK based) to win £2000 for their research efforts by getting people to vote in a May and JUNe vote- the details are: Vote in the Direct Debit Big Break to raise money for each of the ME charities over the next few months. This is a great opportunity to help biomedical cfs/me research just by voting wherever you are in the world.The charity with the most votes wins the £2000 prize.In order to vote online you will need to be logged in with a valid Facebook, Twitter or Google account. When you vote Direct Debit will use your email address and IP address for the purpose of ensuring your vote is valid and to prevent multiple votes being logged. Personal information will not be used for any other reason. Or you: can vote via text message from your cellphone/mobile but this particular method is only available for Uk residents . Text and other voting involves clicking on your chosen cause's logo. The 2 charities are: In May vote:ME Association and in the June vote ME Research UK. Me association’s logo is purple-if unfamiliar you may wish to do a search for these charities to see the logo. To find the Big Break site:Internet Search: direct debit big break. PRESS ‘Big Break for charity’ on Left Hand Side. https://www.directdebit.co.uk/DirectDebitPromotions/BigBreak2014/Pages/CauseDetail.aspx?CauseId=381http://www.meassociation.org.uk/
I think it would be helpful to five more description of what might be involved in the volunteering. I don't know, for example, what sort of article/info. would be needed for a blog. Am I qualified? How is the fund raising done, and so on. Also, do we need to talk on the phone? I am fine with pacing myself via email, but find talking on the phone exhausting. Thank you.
I would like to see basic info about ME and also advocacy initiatives be made available in Spanish. Currently what is available in Spanish is very limited and may not be presenting an accurate view of ME. In the US there is a very large Spanish speaking population. While they may speak some English, it is usually easier to understand information, especially information on ME, in a person's first language. Form a purely advocacy point of view this is a growing demographic in the US that is essentially untapped by the ME community.
This format is a bit Wkward on my smartphone. I typed in my opinion in the first box that looks like the only comment box. Now it looks like my comment got cut off. Anyways, I'd suggest an intro saying who is running this group. Otherwise think many won't join