See, and I think it is more important than ever that we keep visible and try to engage in a critical dialogue with the NIH. Why should we have to pander and "get on the good side of the NIH"? They are scientists and this is their job (and if you're a US citizen you are contributing to their salaries), and if they are seating unqualified people at OUR table for OUR research, I think it is incumbent on us to step up and firmly and diplomatically be heard - We are our own advocates, and if we won't represent us, then we will likely fail, and we will have no one to blame except ourselves.
-
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.
To become a member, simply click the Register button at the top right.
Occupy M.E. (Jennie Spotila): Fact Checking, Dr. Nath
- Thread starter mango
- Start date
See, and I think it is more important than ever that we keep visible and try to engage in a critical dialogue with the NIH. Why should we have to pander and "get on the good side of the NIH"? They are scientists and this is their job (and if you're a US citizen you are contributing to their salaries), and if they are seating unqualified people at OUR table for OUR research, I think it is incumbent on us to step up and firmly and diplomatically be heard - We are our own advocates, and if we won't represent us, then we will likely fail, and we will have no one to blame except ourselves.
Nielk
Senior Member
- Messages
- 6,970
I agree 100%. HIV/AIDS advocates were forceful and fought NIH decades ago. They have gotten an estimated $50 billion over time. Today, HIV/AIDS is a treatable disease and Collins is talking about eradication.
Think of where science on ME would be if NIH would have spend similarly on us. (Or even a tenth of that amount)
A.B.
Senior Member
- Messages
- 3,780
The NIH is currently in the process of seriously increasing funding for ME/CFS. I'm not sure that criticisng some aspects of the intramural study is worth the risk of coming across as inconsolable.
"Inconsolable"? As in hysterical? I think you may be confusing resolved and determined with something else altogether.
There is an argument that says how we come across - within reason - needs to be secondary to the quality and integrity of the research claimed to be undertaken on our behalf.
Also, as partners, we should not be overly fearful of appearances, but instead be more dedicated as vested parties to the generation of meaningful data.
This is all the more true if we are concerned that some elements of the study may in fact compromise its integrity. How can we stay silent with such concerns? Because we had the temerity to voice them a couple of times? If we must declare them 10 times or 20 times or 100 times, then we should, yes?
If something threatens to undermine the value and meaning of a study, then it will remain a risk regardless of whether we have the will to represent ourselves or not. I just think it a better choice to shine a light on those concerns, than placate individuals within the agency that may be realizing them.
There is an argument that says how we come across - within reason - needs to be secondary to the quality and integrity of the research claimed to be undertaken on our behalf.
Also, as partners, we should not be overly fearful of appearances, but instead be more dedicated as vested parties to the generation of meaningful data.
This is all the more true if we are concerned that some elements of the study may in fact compromise its integrity. How can we stay silent with such concerns? Because we had the temerity to voice them a couple of times? If we must declare them 10 times or 20 times or 100 times, then we should, yes?
If something threatens to undermine the value and meaning of a study, then it will remain a risk regardless of whether we have the will to represent ourselves or not. I just think it a better choice to shine a light on those concerns, than placate individuals within the agency that may be realizing them.
Last edited:
A.B.
Senior Member
- Messages
- 3,780
Maybe it's wishful thinking but in my opinion once a decent level of funding is made available to our current researchers, in particular the big names like Lipkin and Davis, they will figure out what is actually going wrong in the body, and then the psychosomatic paradigm will be reduced to a few fringe nutters that can't harm us any longer. Nobody wants to treat asthma or thyrotoxicosis with psychanalysis any more, yet these were once considered prime examples of psychosomatic illness, just like CFS is in some circles.
Getting adequate research funding to make progress is the most important long term goal. The NIH intramural study is much less important.
Getting adequate research funding to make progress is the most important long term goal. The NIH intramural study is much less important.
Last edited:
It's good that J spotila has researched this issue.
As said before I am cautiously optimistic about the NIH study. We should provide constructive criticism to the NIH.
I am slightly puzzled at Dr Nath's comments in April's webinar. He did appear to be stressed and said he felt advocates were antagonising them.
http://www.meaction.net/2016/04/24/transcript-solve-mecfs-interviews-dr-avi-nath/
This is odd because he himself encouraged ACT UP type action in February.
http://www.meaction.net/2016/02/17/qa-about-patient-involvement-act-up-and-rfas-with-dr-nath/
http://www.meaction.net/2016/02/16/transcripts-and-slides-from-dr-naths-talk-on-nih-study/
It is strange that he would then react like that and threaten that people at NIH may not study our disease.
Bias can never be fully eliminated as nath says but I do think Brian Wallit should be a clear red line and as Lead clinical investigator should not be on the study. Other juniors on the study may have some views we don t agree with but they do not have to removed and could stay. However Wallit 's obnoxious views and senior status means surely we could ask and all agree he must go.
There is a fine line to tread here and we must be careful not to antagonise the NIH but surely they must understand unlike many other groups sick people with ME have been abandoned for decades by NIH and surely some people will be frustrated and these researchers are healthy and are in well paid jobs and should have a thick skin to deal with some criticism of the study given our very own lives depend on it.
It is very disappointing that both Wallit and nath did not want to even be interviewed by Julie rehmeyer and jennie spotila. Not a very good omen for open communication with the community.
Given he said some people not wish to study our disease and can leave the study because of correspondence received and stuff on social media, why is it such a big ask to have Wallit removed and the controversy be removed.??
As said before I am cautiously optimistic about the NIH study. We should provide constructive criticism to the NIH.
I am slightly puzzled at Dr Nath's comments in April's webinar. He did appear to be stressed and said he felt advocates were antagonising them.
http://www.meaction.net/2016/04/24/transcript-solve-mecfs-interviews-dr-avi-nath/
This is odd because he himself encouraged ACT UP type action in February.
http://www.meaction.net/2016/02/17/qa-about-patient-involvement-act-up-and-rfas-with-dr-nath/
http://www.meaction.net/2016/02/16/transcripts-and-slides-from-dr-naths-talk-on-nih-study/
It is strange that he would then react like that and threaten that people at NIH may not study our disease.
Bias can never be fully eliminated as nath says but I do think Brian Wallit should be a clear red line and as Lead clinical investigator should not be on the study. Other juniors on the study may have some views we don t agree with but they do not have to removed and could stay. However Wallit 's obnoxious views and senior status means surely we could ask and all agree he must go.
There is a fine line to tread here and we must be careful not to antagonise the NIH but surely they must understand unlike many other groups sick people with ME have been abandoned for decades by NIH and surely some people will be frustrated and these researchers are healthy and are in well paid jobs and should have a thick skin to deal with some criticism of the study given our very own lives depend on it.
It is very disappointing that both Wallit and nath did not want to even be interviewed by Julie rehmeyer and jennie spotila. Not a very good omen for open communication with the community.
Given he said some people not wish to study our disease and can leave the study because of correspondence received and stuff on social media, why is it such a big ask to have Wallit removed and the controversy be removed.??
Last edited:
Michelle
Decennial ME/CFS patient
- Messages
- 172
- Location
- Portland, OR
One could argue that until there IS a paradigm shift at the NIH, there will not be appropriate funding. And by paradigm shift I mean no decisions about us, without us. If they could do it with HIV/AIDS research, why not ME/cfs? Why is asking to be included in the design of the study be such a far-fetched thing to ask? Especially with all the current talk about patient-centered outcomes?
To reinforce @jspotila 's point about the vociferousness of HIV/AIDS activism -- especially with ACT-UP -- consider the upper left section from the poster for the documentary How To Survive a Plague regarding a still-acting director of an NIH institute (er, attached -- first time I've ever uploaded a file!). Not pleasant. Not nice. But effective. And Dr. Fauci and Larry Kramer are now best buddies. I think Burnmeister et al.'s tweets to Dr. Collins are worst than pointless as they show a marked ignorance of how government bureaucracies work (for one thing, Dr. Collins is not a dictator). But it's Twitter for heaven's sake. There's a block button. Use it. (And I get the sense that Dr. Collins understands this).
I get it -- I really, seriously, totally get it -- that we are desperate for NIH's help and don't want to bite the hand that feeds us, so to speak. And Dr. Nath is BRILLIANT and it's so cool that he of all people is working on this project. But we are women. We are men. For too long being a patient has meant shutting up and doing whatever the doctor says. This. Must. End. No decisions about us, without us.
Attachments
Michelle
Decennial ME/CFS patient
- Messages
- 172
- Location
- Portland, OR
In thinking about this a bit more, I'd add an addition (long-winded) thought:
@jspotila is making an important point about the need for NIH to include patients in decision-making. It isn't just about being nice to patients (though that would be, well, nice). It's also about the effective use of NIH resources. Had NIH included patient representatives as well as outside researchers like Dan Peterson and Nancy Klimas (who have been doing this the longest) when they sat down to design this study, they could have designed a better study -- one that didn't unnecessarily duplicate efforts that have already been done by people like Peterson and Klimas. One that could make even better use of the extraordinary resources of the Clinical Care Center. And they could have avoided even more upset in an already angry and suspicious community as a patient rep would have seen very quickly that, at the very least, Gill would be a problem given his notoriety over the years.
And this isn't just about ME/CFS. This should be across the board at NIH. Ideally it should include patients in study designs, grant review committees, etc. for every disease. I do appreciate there are bureaucratic issues that make this difficult. And, of course, I would never argue that patients should be micromanaging every study (which would be impossible — especially as most NIH-funded research is extramural). But when it comes to central decisions and priorities with regard to how NIH researches and/or funds a disease, patients and leading members of the non-NIH research community should absolutely be involved.
Consider the IOM contract. I believe Susan Meier made the right decision to use the prestige of the IOM to validate the reality of ME/CFS. But the way she and/or NIH went about doing that produced enormous ill-will in the community that will take years to repair. It also required tremendous emotional (and physical) exertion from a sick patient population. All because they simply would not sit down and talk with us. An advisory committee of some sort or other could have been extremely helpful in that situation. Even now NIH is using ad-hoc (@viggster ) or reactive (teleconference) means to communicate with patients that is enormously inefficient for everyone involved (while I'm extremely grateful for all of @viggster 's efforts, I'm sure he has better uses for his limited energy, as does Drs. Nath, Collins, Koroshetz, Whittemore, etc.). Scraps when one is hungry are eagerly welcomed. But they are still scraps. I see no reason why we should not have a seat at the table -- not just because it's the "nice" thing to do, but because in this case it could be more efficient for all.
I can well imagine that the bureaucratic realities of the NIH makes them reticent to do this. It would involve more (!) meetings when everybody is already overloaded. It would complicate already complicated office politics. I can well imagine based on my own experience with various-sized bureaucracies (but it's only that: my imagination) an organizational political situation where Wallit and Gill are the official "CFS experts" in the NIH structure and thus, ergo, must be involved in this and any CFS study. And in such a scenario there may be no way around that so Nath, Koroshetz, and Collins are trying to put a brave, organizational face on it -- and there's no shame in that. We all muddle on as best we can. Then again, if NIH were to change the structure of the organization to include patients, it may not be needing to expend so much energy on defending questionable members of the organization (though, it would probably get frittered away on something else
)
Yes, I know. Patient reps can get co-opted. It's not a panacea. There are probably a zillion other potential problems. But I do think it would be a huge step in the right direction toward a more efficient, more cooperative NIH not just for ME/CFS patients but for everybody.
I do want to underscore in case it's not clear from my above post that I'm genuinely stoked about dr. Nath being involved in this study. I think he is exactly the sort of researcher to do such a study. While I was a bit frustrated with his encouragement of patients to "act-up" only to turn around and moan a bit about criticism ("passive aggressive" was my initial thought), in thinking about it further I suspect he was targeting his "act-up" reference to patients "acting" on or targeting Congress for appropriations. Which yes. Absolutely. But I do hope he would recognize that at the end of the day we want the same thing he wants: the very best science.
@jspotila is making an important point about the need for NIH to include patients in decision-making. It isn't just about being nice to patients (though that would be, well, nice). It's also about the effective use of NIH resources. Had NIH included patient representatives as well as outside researchers like Dan Peterson and Nancy Klimas (who have been doing this the longest) when they sat down to design this study, they could have designed a better study -- one that didn't unnecessarily duplicate efforts that have already been done by people like Peterson and Klimas. One that could make even better use of the extraordinary resources of the Clinical Care Center. And they could have avoided even more upset in an already angry and suspicious community as a patient rep would have seen very quickly that, at the very least, Gill would be a problem given his notoriety over the years.
And this isn't just about ME/CFS. This should be across the board at NIH. Ideally it should include patients in study designs, grant review committees, etc. for every disease. I do appreciate there are bureaucratic issues that make this difficult. And, of course, I would never argue that patients should be micromanaging every study (which would be impossible — especially as most NIH-funded research is extramural). But when it comes to central decisions and priorities with regard to how NIH researches and/or funds a disease, patients and leading members of the non-NIH research community should absolutely be involved.
Consider the IOM contract. I believe Susan Meier made the right decision to use the prestige of the IOM to validate the reality of ME/CFS. But the way she and/or NIH went about doing that produced enormous ill-will in the community that will take years to repair. It also required tremendous emotional (and physical) exertion from a sick patient population. All because they simply would not sit down and talk with us. An advisory committee of some sort or other could have been extremely helpful in that situation. Even now NIH is using ad-hoc (@viggster ) or reactive (teleconference) means to communicate with patients that is enormously inefficient for everyone involved (while I'm extremely grateful for all of @viggster 's efforts, I'm sure he has better uses for his limited energy, as does Drs. Nath, Collins, Koroshetz, Whittemore, etc.). Scraps when one is hungry are eagerly welcomed. But they are still scraps. I see no reason why we should not have a seat at the table -- not just because it's the "nice" thing to do, but because in this case it could be more efficient for all.
I can well imagine that the bureaucratic realities of the NIH makes them reticent to do this. It would involve more (!) meetings when everybody is already overloaded. It would complicate already complicated office politics. I can well imagine based on my own experience with various-sized bureaucracies (but it's only that: my imagination) an organizational political situation where Wallit and Gill are the official "CFS experts" in the NIH structure and thus, ergo, must be involved in this and any CFS study. And in such a scenario there may be no way around that so Nath, Koroshetz, and Collins are trying to put a brave, organizational face on it -- and there's no shame in that. We all muddle on as best we can. Then again, if NIH were to change the structure of the organization to include patients, it may not be needing to expend so much energy on defending questionable members of the organization (though, it would probably get frittered away on something else
)Yes, I know. Patient reps can get co-opted. It's not a panacea. There are probably a zillion other potential problems. But I do think it would be a huge step in the right direction toward a more efficient, more cooperative NIH not just for ME/CFS patients but for everybody.
I do want to underscore in case it's not clear from my above post that I'm genuinely stoked about dr. Nath being involved in this study. I think he is exactly the sort of researcher to do such a study. While I was a bit frustrated with his encouragement of patients to "act-up" only to turn around and moan a bit about criticism ("passive aggressive" was my initial thought), in thinking about it further I suspect he was targeting his "act-up" reference to patients "acting" on or targeting Congress for appropriations. Which yes. Absolutely. But I do hope he would recognize that at the end of the day we want the same thing he wants: the very best science.
viggster
Senior Member
- Messages
- 464
Re-reading @jspotila's blog posts and I'm wondering if she'd be willing to post all the emails she received from her FOIA request. I think that reasonable people can read the same emails and possibly come to different conclusions about them. [Edit: All the names of the senders are already redacted, so no privacy issues.]
Also, I take small issue with how her first post characterizes Dr. Nath's remarks. The post states, "My interpretation of these emails is that they do not justify Dr. Nath’s remarks about ME advocates antagonizing researchers."
Dr. Nath said that patients need to be "a little bit careful" or they may end up "antagonizing" researchers. That's a bit of a different statement.
Thirdly, I'm wondering if @jspotila received any emails directed towards Vicky Whittemore?
Thanks.
Also, I take small issue with how her first post characterizes Dr. Nath's remarks. The post states, "My interpretation of these emails is that they do not justify Dr. Nath’s remarks about ME advocates antagonizing researchers."
Dr. Nath said that patients need to be "a little bit careful" or they may end up "antagonizing" researchers. That's a bit of a different statement.
Thirdly, I'm wondering if @jspotila received any emails directed towards Vicky Whittemore?
Thanks.
Would be very interested to read more about this.
Actually, not all the names of senders are redacted. Anyone who the NIH FOIA office considers to be a public figure in this arena does not have their names redacted. In addition, it is possible to identify who some of the senders are through careful deduction (or places where NIH missed a name they should have redacted). I understand your point, Brian, but I'm not able to go through and finish the redaction job on NIH's behalf.
To your second point, here is Dr. Nath's full quote from the webinar:
I'll let readers judge for themselves.
You asked if I received any emails sent to Dr. Whittemore. I did not request her emails. Since Nath's comments were about scientists not wanting to be associated with the study, I requested emails sent to the 28 researchers that Dr. Nath had identified at the CDC Grand Rounds.
Nielk
Senior Member
- Messages
- 6,970
This comment was co-written and posted by advocates Gabby Klein and Eileen Holderman.
Much effort has been expended looking into allegations of the ME patient community’s alleged misbehavior. This tactic has been used time and time again by those in power who have tried to silence our community of severely ill patients and advocates. These tactics have been used by Wessely and other psychiatrists in the UK (as evidenced by the latest PACE trial tribunal decision) and have been and are currently used by the US government health agencies (as evidenced by the NIH FOIA emails) in order to control us and squash any criticism and dissent of government programs and studies.
For the past thirty years, advocates and advocacy groups have worked effectively on our behalf when interacting with HHS. Advocates have: attended meetings, medical conferences, and CFSAC meetings; testified at CFSAC meetings; served as members of CFSAC; participated on panels and workshops; written emails; organized petitions; written articles and blog posts; called government officials; lobbied congressmen; demonstrated and protested; contacted members of the press; and spoken out on social media about issues surrounding the politics and science of ME. Despite suffering from a serious illness or caring for someone with the illness, advocates have conducted themselves in a professional, informed yet challenging manner.
Though advocates have acted in a proper manner, government health agencies, some rogue academics and a fringe group of psychiatrists, mostly from the UK, continue to levy false allegations against, and miscategorize the patient and advocate community. These allegations are then propagated by some members of the press and even individuals from within the ME community. Tactics such as false allegations, as well as other tactics such as intimidation, verbal abuse and profanity, bullying, silencing, ostracizing, patronizing and self-appointed policing aim to degrade advocates and silence their important voice.
All advocates and patients have the right to speak their minds when addressing government officials – including Dr. Francis Collins who is (and has been for the past 7 ½ years) responsible for the health of all Americans. The ME community is free to make strong demands, whether they are making their points at meetings, in emails, and/or on social media including Facebook and Twitter.
Much effort has been expended looking into allegations of the ME patient community’s alleged misbehavior. This tactic has been used time and time again by those in power who have tried to silence our community of severely ill patients and advocates. These tactics have been used by Wessely and other psychiatrists in the UK (as evidenced by the latest PACE trial tribunal decision) and have been and are currently used by the US government health agencies (as evidenced by the NIH FOIA emails) in order to control us and squash any criticism and dissent of government programs and studies.
For the past thirty years, advocates and advocacy groups have worked effectively on our behalf when interacting with HHS. Advocates have: attended meetings, medical conferences, and CFSAC meetings; testified at CFSAC meetings; served as members of CFSAC; participated on panels and workshops; written emails; organized petitions; written articles and blog posts; called government officials; lobbied congressmen; demonstrated and protested; contacted members of the press; and spoken out on social media about issues surrounding the politics and science of ME. Despite suffering from a serious illness or caring for someone with the illness, advocates have conducted themselves in a professional, informed yet challenging manner.
Though advocates have acted in a proper manner, government health agencies, some rogue academics and a fringe group of psychiatrists, mostly from the UK, continue to levy false allegations against, and miscategorize the patient and advocate community. These allegations are then propagated by some members of the press and even individuals from within the ME community. Tactics such as false allegations, as well as other tactics such as intimidation, verbal abuse and profanity, bullying, silencing, ostracizing, patronizing and self-appointed policing aim to degrade advocates and silence their important voice.
All advocates and patients have the right to speak their minds when addressing government officials – including Dr. Francis Collins who is (and has been for the past 7 ½ years) responsible for the health of all Americans. The ME community is free to make strong demands, whether they are making their points at meetings, in emails, and/or on social media including Facebook and Twitter.
mfairma
Senior Member
- Messages
- 205
If you want the emails, Brian, and Jennie is unable to provide, you should be able to request the same from the relevant agencies. If they've already been reviewed, they should just release them with no fuss and minimal cost.
actup
Senior Member
- Messages
- 162
- Location
- Pacific NW
The disease first popped up in the 1930's fact. Thats over 80 yrs ago. Fact.
The claiming of antagonising researchers are you kidding me. Though not right if done in a negative abusive way is not ok.
That said how many emails did Nath and Wallit recieve that gave thanks?
I sent them...im sure others did too....yeah I sent a nice email to Wallit wishing him luck by engaging in this study....did these individuals ever talk about the thanking of patients for finally doing something?
Im happy that certain areas have been called into question. They need to be. You cant ignore a disease that affects more people than HIV in many countries, effects way more ppl than MS and has the lowest QOL Score of any chronic disease and NOT 1 APPROVED TREATMENT.
The way ME and its suffers have been treated is beyond words.
We have a right to voice our opinions negative, daragatory and harrassing emails, tweets and facebook posts are petty. And dont help.
But guess what ppl there are always a few bad apples on every tree. And in some cases the those bad apples turn because a bug just keeps eating them alive and in last ditch efforts snapps and falls off the tree.
Why not request an FOIA request of all the positive emails of thanks and compare some statistics.....wonder what the stats would show?
Did it ever come to thought that maybe certain individuals ranted and raved about negative feedback when in actuality it was from one or 2 or 5 or more directed at one individual? Then the individual spoke openly and freely to many colleagues blowing the situation way out of proportion and far from the reality of what actually was emailed.
Have you ever worked in a workplace where a colleague constantly complained when in actuality it was just a cover for doing less, drama, or negative attitude towards people? I have I dont work at the NIH and dont know what gets talked about when it comes to ME...but I have had Drs walk out of the room the second I told them I had the DX.
I sent to Dr Wallit not the whole email as it was my story nothing nasty at all:
I pray lots that the NIH/CDC Study will shed light on this unfathomable disease. I hope you and your team can help the millions of suffering people and I keep holding onto that faith.
I wish you the best of luck in finding out what is wrong with this illness. So that you can help us in the future.
Regards,
I honestly hope the NIH can put the pieces of the puzzle together regardles who is involved and whatever biases exists even though they are truely concerning.
All I would like to see is that ME is given what the suffers deserve and thats answers and treatment.
Resentment is a breading ground for unhappiness. And at this point the disease is chronic in nature.
What has happened over and over in history is that the truth is more times then not brought to light. This will be the case for ME and is already the case as some ppl are in remission or recovered or functional again....with and without the help of Drs.
Maybe it for ME organizations to make a commercial showcasing the disease and its severity and highlighting the various causes and state the staggering facts of 17 to 22 million affected world wide......
Thanks @jspotila for your work
Davis and Lipkin deserve the money this would be a gesture of good faith considering their Tenure and renue our faith in the hands of people that control it.
The claiming of antagonising researchers are you kidding me. Though not right if done in a negative abusive way is not ok.
That said how many emails did Nath and Wallit recieve that gave thanks?
I sent them...im sure others did too....yeah I sent a nice email to Wallit wishing him luck by engaging in this study....did these individuals ever talk about the thanking of patients for finally doing something?
Im happy that certain areas have been called into question. They need to be. You cant ignore a disease that affects more people than HIV in many countries, effects way more ppl than MS and has the lowest QOL Score of any chronic disease and NOT 1 APPROVED TREATMENT.
The way ME and its suffers have been treated is beyond words.
We have a right to voice our opinions negative, daragatory and harrassing emails, tweets and facebook posts are petty. And dont help.
But guess what ppl there are always a few bad apples on every tree. And in some cases the those bad apples turn because a bug just keeps eating them alive and in last ditch efforts snapps and falls off the tree.
Why not request an FOIA request of all the positive emails of thanks and compare some statistics.....wonder what the stats would show?
Did it ever come to thought that maybe certain individuals ranted and raved about negative feedback when in actuality it was from one or 2 or 5 or more directed at one individual? Then the individual spoke openly and freely to many colleagues blowing the situation way out of proportion and far from the reality of what actually was emailed.
Have you ever worked in a workplace where a colleague constantly complained when in actuality it was just a cover for doing less, drama, or negative attitude towards people? I have I dont work at the NIH and dont know what gets talked about when it comes to ME...but I have had Drs walk out of the room the second I told them I had the DX.
I sent to Dr Wallit not the whole email as it was my story nothing nasty at all:
I pray lots that the NIH/CDC Study will shed light on this unfathomable disease. I hope you and your team can help the millions of suffering people and I keep holding onto that faith.
I wish you the best of luck in finding out what is wrong with this illness. So that you can help us in the future.
Regards,
I honestly hope the NIH can put the pieces of the puzzle together regardles who is involved and whatever biases exists even though they are truely concerning.
All I would like to see is that ME is given what the suffers deserve and thats answers and treatment.
Resentment is a breading ground for unhappiness. And at this point the disease is chronic in nature.
What has happened over and over in history is that the truth is more times then not brought to light. This will be the case for ME and is already the case as some ppl are in remission or recovered or functional again....with and without the help of Drs.
Maybe it for ME organizations to make a commercial showcasing the disease and its severity and highlighting the various causes and state the staggering facts of 17 to 22 million affected world wide......
Thanks @jspotila for your work
Davis and Lipkin deserve the money this would be a gesture of good faith considering their Tenure and renue our faith in the hands of people that control it.
Izola
Senior Member
- Messages
- 495
That all costs money that many don't have. Then there is the agony of all that stress. I can't imagine legal action as "available" to most people with M.E./CFS.
Wallit's and Nath's bias could seriously impact the researchers and the research. We have lived too long with the detrimental PACE and its predecessor pushers.
iz
Last edited:
actup
Senior Member
- Messages
- 162
- Location
- Pacific NW
@Izola legal action is often an excellent and fast way to change behavior but you are right it does take resources (energy, time and money). Many of us have gone undiagnosed with very serious comorbid conditions due to large US clinic's policies of strongly discouraging testing and specialty MDs for pwme/cfs. Ideally the CDC should be sued but that's very difficult due to "sovereign immunity laws".
↑
"sovereign immunity" laws in the US make it very difficult to sue the federal government and permission to do so must be granted by a govt office set up for that purpose. How convenient-for them. But it is possible and I'd love to see it happen. Meanwhile we can change behavior in large private clinics. Their approaches to dealing with the me/cfs patient population are used as models for smaller practices.
http://www.nolo.com/legal-encyclopedia/suing-government-negligence-FTCA-29705.html
Recent solid research results plus the many decades of preceding research results only strengthen our cases for SEVERE MEDICAL NEGLECT.
↑
"sovereign immunity" laws in the US make it very difficult to sue the federal government and permission to do so must be granted by a govt office set up for that purpose. How convenient-for them. But it is possible and I'd love to see it happen. Meanwhile we can change behavior in large private clinics. Their approaches to dealing with the me/cfs patient population are used as models for smaller practices.
http://www.nolo.com/legal-encyclopedia/suing-government-negligence-FTCA-29705.html
Recent solid research results plus the many decades of preceding research results only strengthen our cases for SEVERE MEDICAL NEGLECT.
Izola
Senior Member
- Messages
- 495
@actup Yes, I, too, have idly pondered whether a class action was viable, not that I could do anything to pursue it, or even help with it. I am far too ill and now trying hard to gather info to try, again, to bring up my function through supplementation. I am, pretty much, a vegetable.
Decades ago, as a student, I wrote an exhaustive review of Federal governmental immunity. A state AAG borrowed it and I never saw it again. Guess it was that good. There were, then, a lot of holes one could slip through. Possibly, there still are. I wonder if just idly bringing up the subject might ruffle feathers since, obliquely, we are on that topic. iz
actup
Senior Member
- Messages
- 162
- Location
- Pacific NW
Not exactly a new topic on the forum but needs to be revisited periodically
http://forums.phoenixrising.me/inde...on-lawsuit-under-rico-against-sebelius.25920/
http://forums.aboutmecfs.org/showthread.php?6640-Its-lawsuit-time-.-.-.&highlight=legal action
@Izola, ruffling some feathers not a bad idea.
http://forums.phoenixrising.me/inde...on-lawsuit-under-rico-against-sebelius.25920/
http://forums.aboutmecfs.org/showthread.php?6640-Its-lawsuit-time-.-.-.&highlight=legal action
@Izola, ruffling some feathers not a bad idea.
Izola
Senior Member
- Messages
- 495
@actup
A different shade of Tuskeegee??? Human rights?
Overall, human rights violations c/a. Cousin to Tuskegee, different motive, different MO, All w/ grave pain and suffering, lives destroyed. And some scientists are impacted by a couple of tweets? -- Get over it and buck up. (Oh, that ["buck up"] sounds way too familiar)
(We're off topic.
). I've lost the brain function to remember how to do conversations and am too dysfunctional to start a thread. iz