NIH phonecall and Q&A, Tues 8 March

[viggster]

I'm also disturbed to hear that they want to get a new 3rd control group. This just reeks of an attempt to sabotage the capacity of the results to obtain statistic significance. Since when is it the case "more control groups are always better"?

Yeah, this is worrying and I hope someone (@viggster?) can give us more details soon. Was this mentioned at all in the NIH call yesterday? If it wasn't it really doesn't look like the NIH is being as open as they need to be...

FAQ question 4:
4. Will there be additional control group?
There are many other potential control groups that can strengthen the science of the study through comparison. There is ongoing discussion about whether an additional control group or control groups should be included.

http://mecfs.ctss.nih.gov/faq.html

Some patients asked them to consider an MS control group. I don't have any other information. I don't think adding an MS control group would be an "attempt to sabotage" the study.

 

[Bob]

In fact they seemed to be trying to downgrade our expectations by pointing out that their study size is too small to be statistically significant, and any possibly significant results would then be subject to yet more years of delay to find out if they are significant. This is failure by design, and they admit it. Amazing.

They haven't said anything about statistical significance, as far as I'm aware. They simply said that adding more patients to this initial study will make it a slow process. I assume that's because it's such a massive study in its detail, scope and complexity. In this first stage, I think they are looking for signals (maybe the loudest signals?) that they will then go on to test in large studies, with larger numbers of patients. So the first stage seems like a massive scoping study rather than a traditional research study.

 

[viggster]

That web page hasn't been updated in THREE YEARS. It sure would be nice if CDC would give us some idea of when to expect to see something published. They seem to have no sense of urgency. And I get the same feeling from the phone call yesterday.

In fact they seemed to be trying to downgrade our expectations by pointing out that their study size is too small to be statistically significant, and any possibly significant results would then be subject to yet more years of delay to find out if they are significant. This is failure by design, and they admit it. Amazing.

Then we are told NIH can't use a properly-sized cohort because it would take too long to do it right. My question to NIH:


I definitely don't have time for NIH to do it twice. Neither does Ron Davis' son, or any other severe patient.

I think you're conflating the CDC's multi-site 5 year cohort study with the proposed NIH study. The CDC study is in its 4th year, and Dr. Unger presented some preliminary results at the CDC Grand Rounds on Feb. 16. The NIH intramural study is a separate, new effort and will use a lot of technologies that have never been used on ME patients before.

 

[Stewart]

FAQ question 4:
4. Will there be additional control group?
There are many other potential control groups that can strengthen the science of the study through comparison. There is ongoing discussion about whether an additional control group or control groups should be included.

http://mecfs.ctss.nih.gov/faq.html

Some patients asked them to consider an MS control group. I don't have any other information. I don't think adding an MS control group would be an "attempt to sabotage" the study.

Thanks Viggster - I somehow missed that when I glanced through the FAQ last night. I hereby rescind my comment about the NIH not being open enough (and I'll keep my fingers crossed on the control group front ).

 

[viggster]

Perhaps the best time to judge the NIH on their claims will be in 6 months time ?

That is wise. From the call yesterday, I got the sense there is more going on than they are willing to talk about. It's a shame, really. I think the more NIH reveals about its plans, the better everyone is going to feel about their intentions. But it's a slow process for us to watch unfold. Here's one example: The FAQ that went up yesterday was finished weeks ago, but it had to go through IRB review. The NIH IRBs meet on some schedule and they have a huge pile of things to review each time. Pressure from the top can help, but in the end there are a lot of people who have to review and sign off on things.

 

[Bob]

no way we can amp up money

I got the opposite impression: I thought they were saying that they are actively and creatively seeking to ramp up the money significantly and substantially in the short and long term, and that's its a priority. They are seeking novel ways to kick-start ME/CFS investment, starting with the massive intramural studies. And seeking to bring many new and high profile researchers into the field.

Edit: Actually I'm really impressed with their stated ambitions. Details may disappoint, of course.

 

[Bob]

It will be for naught if the wrong people are being tested.

In my mind at least I would want people who have already done a 2 day exercise test, had NK function tested, done at least a poor man's tilt table test, basically the standard tests and questions Klimas and the rest use to make their determination.

Was there something in the notes about pre-screening all the patients for PEM? I thought I read something about all participants needing to experience PEM, but can't i remember the details. I might be wrong.

 

[Simon]

Actually, that's not what they've said, jimells. The wording was very careful and nuanced: they said that they can't promise us an RFA at the moment. I got the impression that they are working towards an RFA, but that official processes have to be completed before they know if it will go ahead and before they can announce it.

Yesterday, Walter Koroshetz replied to Jennie Spotila - who asked why there have been no RFAs yet - saying he can't commit until it's been signed off by the NIH. But he said RFAs are the goal and at another time in the telebriefing said they were aiming at a May deadline for internal consideration.

 

[searcher]

As a follow up to Simon's post, I just started listening to a recording of the call (which I believe will be uploaded shortly.) Here is a quote from Francis Collins about RFAs toward the beginning of the call:
"So, in addition, on the extramural side, a vigorous re-invigorated trans-NIH Working Group is working to divine the strategic areas of research that would form the basis for a Request for Applications to the extramural community, both in the short term and in the longer term, and Dr. Koroshetz can tell you more about where we are about that particular set of discussions. We’re quite serious about looking for opportunities to expand our research in this area and to recruit new investigators into the field, bringing new eyes and new brains into the issue of trying to understand the puzzling aspects that previously have eluded us. "

 

[Karena]

Hi Deepwater, and welcome to the fun world of the PR forums.

I don't know if Brian Wallit has changed his mind, but that paper is from 2012 (though the two authors express similar views in 2013).

Walitt's infamous FM video continues to be picked up and promoted by some in the medical establishment. I noticed it on the March 2016 home page of www.currentpsychiatry.com.

I'm very excited about the NIH research project. However, I don't understand why Collins or Nath won't address our concerns about Walitt. Given the government's track record, they should make a point of being honest and open with the ME/CFS community.

Why was Walitt selected? Is he the only person who applied for the job? How does he explain past statements that dismiss our disease as a somatic illness that needs no real treatment? Has he changed his mind?

If so, maybe he should send an update to every online site that features his past videos and papers. He could say that he now believes ME/CFS is as real a disease as diabetes and cancer. In other words, he could admit he no longer considers it "a disorder of subjective perception."

As a former newspaper reporter, I know there must be more to the story. If we have to accept Walitt, at least tell us why. Don't pretend that he's a ME/CFS expert who has always had our best interests at heart.

 

[Justin30]

Walitt's infamous FM video continues to be picked up and promoted by some in the medical establishment. I noticed it on the March 2016 home page of www.currentpsychiatry.com.

I'm very excited about the NIH research project. However, I don't understand why Collins or Nath won't address our concerns about Walitt. Given the government's track record, they should make a point of being honest and open with the ME/CFS community.

Why was Walitt selected? Is he the only person who applied for the job? How does he explain past statements that dismiss our disease as a somatic illness that needs no real treatment? Has he changed his mind?

If so, maybe he should send an update to every online site that features his past videos and papers. He could say that he now believes ME/CFS is as real a disease as diabetes and cancer. In other words, he could admit he no longer considers it "a disorder of subjective perception."

As a former newspaper reporter, I know there must be more to the story. If we have to accept Walitt, at least tell us why. Don't pretend that he's a ME/CFS expert who has always had our best interests at heart.

I really value the the thoughts of this last post. Its seems that based on the past perceptions and biases that Walitt and Gill have/had over the years questions still remain unanswered and a large proportion of the patient community feel this way, "Uneasy".

My stance at this point is that "it is what it is" there are to many tests and the selection even if criteria is poor than they will have a really hard time getting real realiable and useful data to move into phase 2 of the study. From my understanding these individuals are at the end of the patient selection process. Patients will be prescreened and selected from well established ME/CFS clinics (i could be wrong).

If what I said above is True Gill, Wallit and the Other will be under major scrutiny from Collins and the Head of the NIND. Who have both stated openly that this is a life altering, biological, crippling disease. There careers would then be subject to scrutiny based on their subordinates ie Wallit, Gill, Nath, etc.

Ask yourself this question. If you had gone to school for 10-15 years and was taught to base conclusions based on real factual strong evidence when supporting a conclusion how would you support the arguments for ME/CFS and FM? I have read countless studies on drugs used for the diseases and about the disease one study agrees the drug works, then the next one doesnt. This goes for research as well one ME study says one thing the you can find a study to contradict the one before.

There has only been one really large study done on us and its PACE and it will likely fall once all the data is realeased. We have to many small studies pointing in every direction. When I was doing my thesis in University if it wasn't strong factual info with backed applicable truth the professor didn't want to hear it or have it included.

I would bet Walitt and Gill see the massive amount of small studies and go "OK." How I am supposed to make a valid conclusion to back. I cant offer drugs that truly help these people so what do I believe?

Wallit then gives a ton of FM Drugs to his patients and he finds few have any affect and some only do for small %. My friends wife is a prime example FM diagnosis, has not worked in many years she tried every FM drug and one not even suggested for use in FM is now working go figure. And by the way that video was on FM...the one done by Wallit...so does everyone now think ME is also FM? There are many that just have FM.

Now look at ME several interventions have been tried. Some work, some dont, some work than stop, some result in remission, some slow progression, some provide symptom relieve, some kill people, some make them bedridden and the list goes on. Ill give you an example Drs using IVIG in CFS at a 1 gram dose when none of the IG classes or subclasses are low and wow it works. Most Drs would scoff at using this when their career and livelyhood is on the line cause a drug like that could cause death in some. Same goes for Ampligen it works only in 1 in 7 patients and others it could bedridden them (which I have heard it has done). ME has no Biomarker, Only 1 big flawed Study, very little funding, no approved drugs, contradictory studies everywhere (although we know it for surely is a biological illness P2P and IOM), Drs that have no clue what to do about the disease or even what to prescribe.

I guess what I am saying is all scientific evidence is lacking at best. The definition needs to be changed and subsets defined.

In the mean time I have some suggestions with regard to Walitt, Gill and the other:

Contact the NIH for a Questioning Session of the Trio live via youtube. Express our gratitude for being included in the process and state that we want to work together as a team to solve this disease. We have but one issue left they is still creating a lot of unrest amongst the community about Gill, Walitt and the Other. Start gathering data (I believe ME patient #s and added control group should be dropped in the discussion at this point)

1. Gather all relevant truly bias quotes not interpretations but actual Quotes
2. Gather all info on Psych Websites that are promoting Walit
3. Gather all Gill and Wallit Study Quotes stating psycosomatic disorder
4. Develop a question around each quote and study finding. Choose the best quotes to be contested.
5. Compile these in a letter and petition for the resignation of these individuals or request for them to come out publically via a strictly Q and A session led by a trusted ME advocacy Group. No Hot Heads
6. Request to have them openly state their view Biological Disease or Psychosomatic
7. Request for them to explain their role in the study and have a premaid list of questions for rebutle if the answers are vague, misleading, or to general
8. If they still cannot clarify what it is they are doing in the study then request for a further review online once this has been determined at a later date
9. Have everything on youtube, social media, and websites
10. Someone start a website containing eveything that pertains to the NIH study and have it on one central website and invite all media outlets to come view it. I would suggest this be a separate website from all our organizations where media can share their views based on facts only.

The final point would be to ask the NIH for a special circustance to have an ME/CFS Specialist or specialists such as Dr. Nancy Klimas who has recieved grants from the NIH to be part of this Trios final selection process if they do not resign.

And just to add to @Karena comment about sending the change of view of Walitt and Gill view of ME. If we can get them on video send it to every psych website all over the world along with a written burlb of this drastic change in view....that is if we try and push the NIH hard enough to get it.

Like I said earlier a serious letter would have to be sent to the NIH about this along with a petition.

Get as mang Organizations to sign it as possible. Ask the top ME drs if they are willing to sign it and or offer their assitance to the NIH openly in the letter.

I cannot stress this enough but hit the one issue that is most bothersome to the ME community and that is the trio. No more of this start the study over from scratch crap.

These ideas may be used by any ME/CFS organzation that views this thread and is acting in the best interest of the ME population.

 

[Comet]

I really value the the thoughts of this last post. Its seems that based on the past perceptions and biases that Walitt and Gill have/had over the years questions still remain unanswered and a large proportion of the patient community feel this way, "Uneasy".

My stance at this point is that "it is what it is" there are to many tests and the selection even if criteria is poor than they will have a really hard time getting real realiable and useful data to move into phase 2 of the study. From my understanding these individuals are at the end of the patient selection process. Patients will be prescreened and selected from well established ME/CFS clinics (i could be wrong).

If what I said above is True Gill, Wallit and the Other will be under major scrutiny from Collins and the Head of the NIND. Who have both stated openly that this is a life altering, biological, crippling disease. There careers would then be subject to scrutiny based on their subordinates ie Wallit, Gill, Nath, etc.

Ask yourself this question. If you had gone to school for 10-15 years and was taught to base conclusions based on real factual strong evidence when supporting a conclusion how would you support the arguments for ME/CFS and FM? I have read countless studies on drugs used for the diseases and about the disease one study agrees the drug works, then the next one doesnt. This goes for research as well one ME study says one thing the you can find a study to contradict the one before.

There has only been one really large study done on us and its PACE and it will likely fall once all the data is realeased. We have to many small studies pointing in every direction. When I was doing my thesis in University if it wasn't strong factual info with backed applicable truth the professor didn't want to hear it or have it included.

I would bet Walitt and Gill see the massive amount of small studies and go "OK." How I am supposed to make a valid conclusion to back. I cant offer drugs that truly help these people so what do I believe?

Wallit then gives a ton of FM Drugs to his patients and he finds few have any affect and some only do for small %. My friends wife is a prime example FM diagnosis, has not worked in many years she tried every FM drug and one not even suggested for use in FM is now working go figure. And by the way that video was on FM...the one done by Wallit...so does everyone now think ME is also FM? There are many that just have FM.

Now look at ME several interventions have been tried. Some work, some dont, some work than stop, some result in remission, some slow progression, some provide symptom relieve, some kill people, some make them bedridden and the list goes on. Ill give you an example Drs using IVIG in CFS at a 1 gram dose when none of the IG classes or subclasses are low and wow it works. Most Drs would scoff at using this when their career and livelyhood is on the line cause a drug like that could cause death in some. Same goes for Ampligen it works only in 1 in 7 patients and others it could bedridden them (which I have heard it has done). ME has no Biomarker, Only 1 big flawed Study, very little funding, no approved drugs, contradictory studies everywhere (although we know it for surely is a biological illness P2P and IOM), Drs that have no clue what to do about the disease or even what to prescribe.

I guess what I am saying is all scientific evidence is lacking at best. The definition needs to be changed and subsets defined.

@Justin30 you make some valid points about improper and inadequate research being completely confusing to doctors.

But something odd happened to me today that stuck in my head and seems relevant to add. I went to the doctor's office to see the nurse practitioner for a urinary tract infection.

I described my symptoms, but when they tested my sample, there was no evidence of infection. Oh great, I sarcastically thought, now I won't get an antibiotic for this and it will get worse.

But then the most unexpected thing happened... she just believed me. Only then could she begin to treat my infection.

 

[jamie]

The objective of this research study is to begin to understand the clinical and biological characteristics of ME/CFS.

The study will be conducted at the NIH Clinical Center in Bethesda, Maryland, to capitalize on the multi-disciplinary state-of-the art research and diagnostic facilities uniquely available in this location. We anticipate that information obtained in this first study will inform future studies of ME/CFS, both at the National Institutes of Health (NIH) and at academic centers world-wide, that study the entire range of ME/CFS clinical presentations.

Initial screening of potential participants is expected to begin in summer 2016.


Participation in this study includes an initial phone screening, an in-person screening visit, and a one-week inpatient stay at the NIH Clinical Center. A brief description of the procedures that will be performed is provided below.

Screening procedures: Interested individuals will initially complete a telephone screening with the study staff, to determine if they might be eligible and for which participant group.

Those who may be eligible and are interested in participating will be asked to visit the NIH Clinical Center outpatient clinic for screening procedures, which include:

• An explanation of the study and signing of the research study consent form
• Medical history
• Physical exam
• Blood and urine collection
• Questions about the participant’s life and their quality of life
• Questions about the participant’s mental health

6. Will ME/CFS experts be involved in selecting patients to enroll?
Clinical experts ( meaning Walitt, Gill and friends!) be reviewing the selection of patients at three different times in the enrollment process.
------------------------
They consider and name Walitt, Gill and associates clinical experts in ME/CFS! That is just false. And they will not only play a key part in choosing the patients in a study that by their own words will influence future studies in the NIH and throughout the world. If they get to stay in this study they will have even more influence over our disease in the future as the resident NIH ME experts.

That's like putting the MS is mass hysteria gang of many years ago in charge of choosing and taking care of the patients in the first government study to prove they are wrong.

They downplay their role as facilitators but they are the link between the patients and the rest of the team, They are charged with the well being of the patients and will be interviewing them about their symptoms and reporting their findings to the rest. They will not even know what questions to ask as they don't know what they don't know. They think they are experts.

They may not be able to influence the hard science but they certainly can influence the discussion between patients and the rest as was said in the phone q&a. They obviously had influence on the controls.

Would any of you feel at ease discussing how you feel to these guys? I can't find the list of their responsibilities but They are the ones patients deal with and considering these are the kinds of doctors we run away from and who have done great damage not only to their patients but to the patients of all the doctors who they have convinced and that these diseases are psychosomatic or whatever words they used.

Just because we asked and they said no to their removal does't mean we should just roll over. It was theater the telephone conference, They didn't allow for follow up because they had made up their mind and posted the final report at the same time as the call so their was no time to react.

I'm sorry but the answer " I'm not bias" "there will be no room for bias" " Lyme was convenient" is not good enough.

If we can't get them out of the study we can ask to get them away from patients and remove CFS expert from their title? The IOM and P2P proved this. They are on the wrong side of history and have no place in a new dresh start with the NIH.


If we take the wait and see approach it may not do harm if we are lucky but do we really want these guys getting their claws into the next generation of ME studies? Plus Walitt seems incredibly dim, I'd rather have a smart person with no prior experience than him. Nath is too good for him and his friends.

I'll sign another petition if any group makes one to reiterate out stand. I hope they do.

*edit, I was writing this before I read @Justine30's recommendations. Now I feel very "ranty" compared with your thoughtful suggestions.

 

[aimossy]

Has the full transcript been posted yet? Here is the full transcript of the NIH Telebrefing from #MEAction.

http://www.meaction.net/2016/03/09/nih-telebriefing-update/

 

[Valentijn]

Some patients asked them to consider an MS control group. I don't have any other information. I don't think adding an MS control group would be an "attempt to sabotage" the study.

Okay. Any time something is compared between the patient group and a control group, there is a chance that a difference between them is a false positive. That's why we have the p-value of 0.05 (or lower), to help ensure the results are probably not a false positive, and actually are statistically significant. Having bigger groups makes it easier to get significant results.

Any time another test is added, there's an additional comparison made between the patient group and the control group, which creates an additional opportunity for a false positive. To deal with this, the p-value becomes lower, or the calculations are tweaked elsewhere to basically get the same effect. But when there are a lot more measurements being made and compared, a bigger difference is needed on any one of those particular measurements for it to reach significance.

By having three control groups, they are tripling the amount of comparisons being made, which is hugely increasing the chance of a false-positive. That means that results must be much bigger to be statistically significant, than if there were only one control group. Maybe there are situations where this is a sensible approach to take ... but not in a small study where those extra control groups have a very small and dubious relevance to the study.

Here's a recent example I came across involving one of the proposed investigators for the upcoming study, Dr Jeffrey I Cohen: http://virologyj.biomedcentral.com/articles/10.1186/1743-422X-8-450 . It was a study involving XMRV in ME patients. On one type of test, 15% of patients were positive compared to 0% of controls. But because there were three tiny control groups, 30% of ME patients would have had to test positive for it to be statistically significant.

Why was Walitt selected? Is he the only person who applied for the job? How does he explain past statements that dismiss our disease as a somatic illness that needs no real treatment? Has he changed his mind?

Somatic means "bodily". It's important to clarify that he believes Fibromyalgia and CFS are "somatoform" or "psychosomatic", not just "somatic".

If what I said above is True Gill, Wallit and the Other will be under major scrutiny from Collins and the Head of the NIND. Who have both stated openly that this is a life altering, biological, crippling disease. There careers would then be subject to scrutiny based on their subordinates ie Wallit, Gill, Nath, etc.

Given that several of the investigators have screwed around regarding other serious, crippling, and almost certainly biological diseases, I doubt their superiors really care about how they decide to interpret biological results. They've done it before, and that's apparently okay with everyone ... so why would that change now?

Ask yourself this question. If you had gone to school for 10-15 years and was taught to base conclusions based on real factual strong evidence when supporting a conclusion how would you support the arguments for ME/CFS and FM?

In that case the answer should be a big "I don't know." But these jokers have decided to reach a completely different conclusion with even less evidence supporting it, by promoting psychosomatic theories.

I would bet Walitt and Gill see the massive amount of small studies and go "OK." How I am supposed to make a valid conclusion to back. I cant offer drugs that truly help these people so what do I believe?

An intelligent and honest doctor would believe that more research is needed. Not that the lack of answers thus far means that the diseases are psychosomatic.

 

[Scarecrow]

Okay. Any time something is compared between the patient group and a control group, there is a chance that a difference between them is a false positive. That's why we have the p-value of 0.05 (or lower), to help ensure the results are probably not a false positive, and actually are statistically significant. Having bigger groups makes it easier to get significant results.

As there aren't any hypotheses being tested in this study (at this stage), we don't need to worry about the false positives. They'll be found out at subsequent stages when further patients are brought in and the initial findings are validated or not.

It's the false negatives that bother me.The won't even be considered an 'unknown unknown' in Rumsfeld speak because they may be irrevocably discounted and not subject to further testing. Avi Nath seems to be confident that the signals they are looking for will be so strong that this won't happen but.....

 

[Valentijn]

As there aren't any hypotheses being tested in this study (at this stage), we don't need to worry about the false positives. They'll be found out at subsequent stages when further patients are brought in and the initial findings are validated or not.

It's the false negatives that bother me.The won't even be considered an 'unknown unknown' in Rumsfeld speak because they may be irrevocably discounted and not subject to further testing. Avi Nath seems to be confident that the signals they are looking for will be so strong that this won't happen but.....

Agreed, false positives shouldn't be the primary concern. But in the process of correcting for them, the introduction of three control groups greatly increases the risk that true positives will seem to be statistically insignificant.

This is why I very much prefer one normal control group. Especially with 6 people on the team who tend toward psychosomatic explanations, even when biological abnormalities are definitely present.

 

[Roy S]

Who do we have to thank for the transcription?

Some of my thoughts --

It's good to have more details, but it would have been a lot better, especially for patients, if this information had been out proactively.

There were some really great questions by the patients.

It's great that they have been consulting with some other researchers that are respected in our community.

Walitt would be on his absolute best behavior on this call. I'd still like to see him removed.

Overall there is still the company line about the NIH being fair and unbiased.

And I don't understand why they can only do one patient at a time for a week.

 

[duncan]

If a clinician recommends GET to an ME/CFS patient, would we trust that clinician to understand PEM enough to reliably identify it?

To appreciate PEM's import to the patients who may suffer it if they subscribe to GET - which supposedly those doctors do, yet still they recommend GET?

To recognize PEM when the doctor hears it described, and not conflate it with deconditioning?

I think this question is relevant if any of the clinicians selecting study participants are regularly recommending GET.

 

[Justin30]

@Valentijn
Given that several of the investigators have screwed around regarding other serious, crippling, and almost certainly biological we need to cast a wide net and get very experienced researchers and clinicians and work with the doctors caring for patients.diseases, I doubt their superiors really care about how they decide to interpret biological results. They've done it before, and that's apparently okay with everyone ... so why would that change now?

In that case the answer should be a big "I don't know." But these jokers have decided to reach a completely different conclusion with even less evidence supporting it, by promoting psychosomatic

An intelligent and honest doctor would believe that more research is needed. Not that the lack of answers thus far means that the diseases are psychosomatic.[/QUOTE]

"we need to cast a wide net and get very experienced researchers and clinicians and work with the doctors caring for patients."

I agree we need a special circumstance to have ME experts involved, both Drs and researchers involved in the study.

Are you referring to the FM video of Wallit? Or do you have actual proof of other illness that are being contested by these reearchers yet substantiate by a body of knowledge arguing that they are indeed a biological illness. Depression had Biological components to the illness and has marked changes in the brain and immune system as per Mady Hornig.

My GP, internist, neurologist and several other Drs I have met with straight up said to me the Dr know only about 30% of what goes on in the brain. They have said that their are more bacteria, viruses and parasites that we have not found, described, or know the physical complications of. They sympathize but know its either to do with the brain or the immune system....but cant say much past that.

"Somatoform disorders are mental illnesses that cause bodily symptoms, including pain. The symptoms can't be traced back to any physical cause. And they are not the result of substance abuse or another mental illness. People with somatoform disorders are not faking their symptoms"


Ie. Science has not caught up or has not found the physical or biological cue to describe the illness in full. This is being dIstorted by UK Psychiatrists and as it stands right now.....that PACE is the only piece of literature that is considered Grade A Research...Which we all know is BULLS***

"Psychosomatic means mind (psyche) and body (soma). A psychosomatic disorder is a disease which involves both mind and body. Some physical diseases are thought to be particularly prone to be made worse by mental factors such as stress and anxiety. Your current mental state can affect how bad a physical disease is at any given time."


More:


"Psychosomatic is defined as concerning or involving both mind and body. Psychosomatic illnesses can be classified in three general types.


****The first type includes people who have both a mental (psychiatric) illness and a medical illness, and these illnesses complicate the symptoms and management of each other. ****


****The second type includes people who have a psychiatric problem that is a direct result of a medical illness or its treatment, such as having depression due to cancer and its treatment.****


We have both present in ME for example Generalized anxiety disorders, depression, emotional liabilty, premmenopause, increased PMS. This is all brought on by physical biological components know as mutations in neurotransmitter pathways, nutrient digestion, inability to detox, damaging neurotoxins, depletions of vitamins and minerals, hormonal changes which are all caused by ME


More:


"However, the term psychosomatic disorder is mainly used to mean ... "a physical disease that is thought to be caused, or made worse, by mental factors".


Stress whether physical, mental, or physiological (viruses, bacteria, toxins, etc.) Makes ME worse just depends on the person. When I am more upset, anxious and depressed I have been worse off then through physical stress.

Their are new areas of science that will be more advanced in the future and will shed light on illness that Drs Cant figure out such as Proteomics, metagenomics, genetics, etc.

Dont forget they still have know how to fully cure all cancers (which late in the dayvwad called consumption)

They dont know how to cure AIDS.

They dont know how to cure MS or ALS.

I dont like the trio but they are educated, and likely the only people involved at the NIH in this disease. I would like to be involved more but have been super sick and replying to these posts drains me. As I stated before if we want change then we need to have one or multiple of or dijointed orhanizations:

Contact the NIH for a Questioning Session of the Trio live via youtube. Express our gratitude for being included in the process and state that we want to work together as a team to solve this disease. We have but one issue left they is still creating a lot of unrest amongst the community about Gill, Walitt and the Other. Start gathering data (I believe ME patient #s and added control group should be dropped in the discussion at this point)

1. Gather all relevant truly bias quotes not interpretations but actual Quotes
2. Gather all info on Psych Websites that are promoting Walit
3. Gather all Gill and Wallit Study Quotes stating psycosomatic disorder
4. Develop a question around each quote and study finding. Choose the best quotes to be contested.
5. Compile these in a letter and petition for the resignation of these individuals or request for them to come out publically via a strictly Q and A session led by a trusted ME advocacy Group. No Hot Heads
6. Request to have them openly state their view Biological Disease or Psychosomatic
7. Request for them to explain their role in the study and have a premaid list of questions for rebutle if the answers are vague, misleading, or to general
8. If they still cannot clarify what it is they are doing in the study then request for a further review online once this has been determined at a later date
9. Have everything on youtube, social media, and websites
10. Someone start a website containing eveything that pertains to the NIH study and have it on one central website and invite all media outlets to come view it. I would suggest this be a separate website from all our organizations where media can share their views based on facts only.

The final point would be to ask the NIH for a special circustance to have an ME/CFS Specialist or specialists such as Dr. Nancy Klimas who has recieved grants from the NIH to be part of this Trios final selection process if they do not resign