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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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What would be the incentive for the physicians/researchers to communicate, share data, and work together so we can get repurposed drugs FDA approved? There will only be one Nobel prize for finding the secret of ME (I doubt most of them want to share it). It's no secret that many of us are dying and committing suicide. It's been over 30 years, why would things change now?
I have been asking the same or a similar question.Why aren't ME/CFS sufferers divided into subgroups according to symptoms,history,genetic testing findings and why isn't someone(CFSassociations,CDC or NIH)keeping track of different treatments on what criteria the patients are selected and which patients those treatments benefit?If researchers are predominantly interested in their theories and their careers shouldn't there be an independent monitoring coordinating evaluating authority and is there some way we can push for the creation of one(maybe gather signatures)?Out of a number of research centers why isn't anyone interested in filling the gap?Or are they competing for clientele?
If you write a petition, I will sign it. Patients need to be Priority #1.
My guess would be that we haven't been divided into subgroups yet because we have mostly been thrown into the psychosomatic subgroup by official/government authorities until now.
I am going to need help ,I don't even know how to start a thread.Who has experience with writing petitions?Can we talk for a few days about what we would like to ask for and who we should address our request to?We want someone a)to coordinate and follow up on research eg try to understand why some subjects benefitted from a treatment such as rituximab(maybe carry out genetic testing)or on the basis of symptoms and history why some subjects tested differently eg did or didnot present with PEM after exercise b)try to distinguish different subgroups according to symptoms,history and genetic testingc)try to follow up on genetic testing that some of you have done and look for other tests and research that can be done according to the polymorphisms as well as potential treatments/supplements that might be suitable and d) gather and make data available to researchers and patients so that they would know what the odds are that a treatment/supplement/test might be of benefit.Who can do that?A goverment authority that hasn't showed an interest in doing this so far,a university ,a researcher or a group of researchers that wouldnot have the instinct to use data to give themselves an advantage,maybe a group of doctors and patients who have medical knowledge?
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I think that it makes better sense to reach to doctors from other countries after there is something concrete eg after it has been proven that rituximab helps a certain percentage of patients and on the basis of symptoms or genetic testing it can be predicted who can be helped and who might be adversely affected although even then I don't know who can notify medical associations or the media in other countries.Maybe their media will report the news that will be reported in western media.I was diagnosed in1993 in Australia.If I was in Greece I don't know if I would have found doctors who think that ME/CFS is an illness that can not be cured with exercise( most doctors who have discussed ME/CFS on Greek TV seem to think that exercise is the cure)I have lived in Greece for the last 17 years most of that time totally uninsured(or only for emergency care).Since the current goverment is allowing uninsured people to have access to health care services I was going to contact The Medical Association in September and ask if there are any doctors who are doing research into ME/CFS so that I can be spared the psychobabble(most people including doctors take vacation in August)I don't think that ideas for research or treatments will likely come from countries where doctors don't follow that closely developments in other countries or in oscure illnesses.Besides cancer patients have to wait for months for treatment,the Health care system in my country and in other countries are in very bad shape which is a good excuse to snub an obscure complicated illness.As far as research and data gathering I would look at USA,Australia and Western Europe for progress.I don't see what can be gained by spending funds in order to contact other countries.Chinese Research into ME/CFS (there was an article a few months ago)is published in english language journals and posted on sites such as PR or UK ME Research.
@Groggy Doggy there is a thread NIH wants your views on what to research and research strategies.Maybe this is an opportunity to share our views since they are taking the trouble to ask us.There was also a similar request by the norwegian research institute a few months ago but I didn't find out on time.Keeping up with the research info discussed in different forums and threads takes up a lot of my time and energy but I'll give it a thought what I think needs to be done although I am not American.I don't know if I am invited to contribute.I had sent the NIH a letter one and a half year ago and they snubbed me.
Thanks for your insight. I took @JaimeS advice and posted feedback to the US Millions Missing protest demands. Now I wish i had copied and pasted segments of your post, into the feedback document, since your words are more eloquently stated. My feedback was regarding HHS to request they do the heavy lifting of gathering treatment data from doctors (globally) who are improving the QoL of patients. As, I recall, there was already a demand listed that spoke to more of a coordinated effort to approach our illness. I was hoping developing and sending out a survey would be something that HHS would have a lot of experience with, and maybe they would consider throwing us a bread crumb to achieve a short term goal that could empower patients in a quicker time frame (because long term goals are too late for the severely ill).
