Webinar with Dr Unger from the CDC Sept 8

[Groggy Doggy]

I think they should seriously give up and say - sorry patients we are not competent and instead we will give money to Davis, Lipkin and some other researchers. But of course they will not and they will play this game for ages.

Now we have the situation here. CDC, NIH have no results, they are designing and researching something but it takes forever. Then there are researchers like Davis, Lipkin, Hanson,...who have ideas, promising results but they always struggle with money.

It´s not shame to confess that you are not able to solve something but why not to give up then and to give your pot with money to someone who is able to solve it. We live in the strange world.

But I am not wondering I worked for state and there were many incompetent, lazy people who didnt care about anything. There were also competent people but unluckilly their positions weren´t that strong like the position of incompetent ones. It´s everywhere the same.

I am already annoyed even read about these people. After 5 years they have absolutly no results. I would resigne immediately.

I would like to see Davis, Lipkin, & Hanson (HDL?) working together. Once that's accomplished then I would like to see a private/public partnership with NIH, so that NIH focuses on using the technology that is not readily available to private researchers. If they were all are working together on the same team, each focusing on their core strengths, then we would see results faster.

 

[Navid]

I think they should seriously give up and say - sorry patients we are not competent and instead we will give money to Davis, Lipkin and some other researchers. But of course they will not and they will play this game for ages.

Now we have the situation here. CDC, NIH have no results, they are designing and researching something but it takes forever. Then there are researchers like Davis, Lipkin, Hanson,...who have ideas, promising results but they always struggle with money.

It´s not shame to confess that you are not able to solve something but why not to give up then and to give your pot with money to someone who is able to solve it. We live in the strange world.

But I am not wondering I worked for state and there were many incompetent, lazy people who didnt care about anything. There were also competent people but unluckilly their positions weren´t that strong like the position of incompetent ones. It´s everywhere the same.

I am already annoyed even read about these people. After 5 years they have absolutly no results. I would resigne immediately.

YES!!!!

THE CDC/NIH make me want to cry ever single time I read or hear anything from them. They are a major cause of depression in this disease.

 

[*GG*]

I think they should seriously give up and say - sorry patients we are not competent and instead we will give money to Davis, Lipkin and some other researchers. But of course they will not and they will play this game for ages.

It´s not shame to confess that you are not able to solve something but why not to give up then and to give your pot with money to someone who is able to solve it. We live in the strange world.

I am already annoyed even read about these people. After 5 years they have absolutly no results. I would resigne immediately.

It's Political, if they did that, they would look More Horribly, and the People who say the Gov't is incompetent, would have a stick to beat them with. I hold little hope that the Gov't will do right by us, look at people who have been seriously injured putting their lives on the line (talking about Veterans here) and look at what the VA is still able to get away with. And they were given Billions more to spend on the problem!

It's the culture, they need to tear it down and try something different. Otherwise it just seems to fit the definition of insanity!

GG

 

[Rooney]

I am wondering if study participants are dropping out. This lack of research product doesn't inspire patients to continue. It's a lot of work when you are so ill and mentally challenged.

She mentioned 400 plus patients and controls today. I thought the original group of patients was 450? I'd love for someone to address this at her presentation next month.

 

[Tuha]

ex

I would like to see Davis, Lipkin, & Hanson (HDL?) working together. Once that's accomplished then I would like to see a private/public partnership with NIH, so that NIH focuses on using the technology that is not readily available to private researchers. If they were all are working together on the same team, each focusing on their core strengths, then we would see results faster.

exactly this kind of cooperation would speed up everything

 

[Tuha]

It's Political, if they did that, they would look More Horribly, and the People who say the Gov't is incompetent, would have a stick to beat them with. I hold little hope that the Gov't will do right by us, look at people who have been seriously injured putting their lives on the line (talking about Veterans here) and look at what the VA is still able to get away with. And they were given Billions more to spend on the problem!

It's the culture, they need to tear it down and try something different. Otherwise it just seems to fit the definition of insanity!

GG

I know that they cannot say directly that they are incompetent but they can do it indirectly. For 30 years we diserve that they speed up the process. After 5 years we even dont know anything about their research. If you want to speed up the process and you want to solve really a problem - it seems differently. You hire the best researchers to work on ME, you make grant options to attract more researchers, you educate doctors, students and especially you cooperate much more with the top-researchers who already work in ME field (you give them financial support) and I could continue.

But I dont see anything from this. Some months ago we hear that in jun or july there will be RAF for ME. We have september and there is nothing. I read the Cort´s interview with Vickey Whittemore - I am not sure if I understood it good by I was more disappointed from her answers and it doesnt look too optimistic. It seems that NIH takes its time again.

 

[Gemini]

I would like to thank dr Nahle for telling it like it is....I am utterly disappointed at how slow the cdc is moving and there is the likelihood that their lack of progress will make them irrelevant in moving forward as Naviaux et al.

Is Dr. Nahle following up with Dr. Unger by any chance re:questions not covered during the webinar?

Three questions I submitted:
1. During your Feb 2015 PCOCA Call you indicated 30 tissue samples from Dr. Chia were to be tested by the CDC. What are the CDC's findings?

2. Drs. Naviaux and Hanson have discovered many ME/CFS patients are in a "hypometabolic state." Will CDC test patients in the 7-site study for a "hypometabolic state?" How will this discovery affect CDC's education programs?

3. There is an urgent need to educate Emergency Room physicians in the diagnosis and treatment of "severely" affected ME/CFS patients and to provide in-home care. What actions are CDC taking to address these critical public health problems?

 

[Nielk]

It's Political, if they did that, they would look More Horribly, and the People who say the Gov't is incompetent, would have a stick to beat them with. I hold little hope that the Gov't will do right by us, look at people who have been seriously injured putting their lives on the line (talking about Veterans here) and look at what the VA is still able to get away with. And they were given Billions more to spend on the problem!

It's the culture, they need to tear it down and try something different. Otherwise it just seems to fit the definition of insanity!

GG

They should just give the proper funding to the private sector to solve diseases. They funded HIV/AIDS and look how much they accomplished in the same timeframe that they neglected funding ME.

 

[*GG*]

They should just give the proper funding to the private sector to solve diseases. They funded HIV/AIDS and look how much they accomplished in the same timeframe that they neglected funding ME.

I agree, I think we need people with Passion and "skin" in the Game like Ron Davis! You know he is going to work very hard to get results!!

GG

 

[Horizon]

Listening to this webinar was a waste of my energy. I felt she wasnt taking the disease seriously or giving us any real actions being taken.

 

[Research 1st]

Listening to this webinar was a waste of my energy. I felt she wasn't taking the disease seriously or giving us any real actions being taken.

In the CFSAC meeting 2010, Beth Unger (head of CFS research, viral disease branch) stated CFS is thought of at CDC as being biological but then added a personal note, that the mind and body are undeniably linked. This is a belief, which is not dissimilar to the British Psychiatric Profession, who claim ME doesn't exist and ME is a 'belief' in ME - ironically hypocritical of course.

E.g. you HAD an infection (Physical), but now it's gone, and the 'belief' in disease has lead you to become weak and deconditioned, so with CBT, you can do GET and get a lot better (Mental).

So to CDC: Body-Mind -Body= CFS Change the mind and Body gets better (Via CBT/GET) - now proven fraudulent therapy in the British PACE trial.

CDC basically support Mind-Body on their public website of 'managing symptoms', with the recent caveat of ''some patients'' find CBT/GET useful, the British are going with ALL patients should engage with CBT/GET, irrespective of their mental state and only metally ill people would reject the idea they can recover - hence Severe ME patients can be locked in psychiatric wards - people like me

This is why, be it in 1988 or 2018, CDC will never change, how can they? 30 years will have passed soon with zero help and zero treatments. If they back down now and 'turn' CFS into something like MS, American patients will sue the CDC for backing a psych therapy that never worked - so officially, ''it works''' (you make it work, by never having a diagnostic test and having some vague to define 'it' - Fatigue, is vague and cannot be proven in CFS without special tests that aren't required for a diagnosis of CFS, e.g. a TILT test).

In their mind the CDC take CFS very seriously, but the mind and it's interaction with the environment is a complex thing you see......... and to keep that little chestnut rolling:

1) Only use patients with subjective reports of fatigue, using standard tets - call these 'CFS'.
2) Do not permit tests that prove ongoing organic disease, such as 2 Day VO2 Max test.
3) Do not change Fukuda criteria CFS to diagnose, replacing it with something like CCC CFS, ME-ICC, IOM SEID.

Job done and a Job for life.

As for us? We're an irritating irrelevance that won't go away and shouldn't make demands, as it 'upsets researchers', so we should go back to our beds, until we are 75yrs old, and then we can marry and have kids - sadly, not far from reality for those who were older when they got sick in the 1970's.

 

[Snowdrop]

but then added a personal note, that the mind and body are undeniably linked.

It's always so easy to say. And it's always said by those admonishing others. BU has zero to loose being invested in this belief system.

In their mind the CDC take CFS very seriously

Niggling little point and not to play lawyer but I would have used alleged mind when it comes to CDC's thinking around this disease. They'll need that caveat when it comes time to be held accountable.

 

[GalaxiiGrl]

This is why, be it in 1988 or 2018, CDC will never change, how can they? 30 years will have passed soon with zero help and zero treatments. If they back down now and 'turn' CFS into something like MS, American patients will sue the CDC for backing a psych therapy that never worked - so officially, ''it works''' (you make it work, by never having a diagnostic test and having some vague to define 'it' - Fatigue, is vague and cannot be proven in CFS without special tests that aren't required for a diagnosis of CFS, e.g. a TILT test).

You hit the nail directly on the head right here. I've thought this for a while now, as well. This is exactly why the CDC simply refuses to change their narrative of CFS as one of a group of "fatiguing illnesses" and continuing to use the Fukuda definition, which emphasizes fatigue. They plan to string us along with empty promises indefinitely.

 

[Research 1st]

I
Niggling little point and not to play lawyer but I would have used alleged mind when it comes to CDC's thinking around this disease. They'll need that caveat when it comes time to be held accountable.

Here's the quote:

''Let me say that I think there has never been any doubt in the CFS program at CDC there is a biologic basis
with this illness''.

''It is not code speak in our minds if we talk about a psychosomatic illness it is a reflection of the mind-body
connection''.

''I think that's one of the things that our society does not do a good job of understanding there is a mind body connection and when you start understanding how people respond to their illness and how their illness affects them, it is a circle''.

Source:
Elizabeth Unger MD, Phd.
Head of the Chronic Viral Diseases Branch
Chronic Fatigue Syndrome Advisory Committee (CFSAC), October 2010.

Of note, no one would say this about an autoimmune disease, cancer, or infection - all of which can affect sufferers diagnosed with ME CFS, and it's that, that keeps patients sick, not the ''mind body connection' as the head of the viral disease branch suggests.

Most bizarre, but there we go.

 

[duncan]

The CDC.

All one needs do is glance over at their Lyme record - as recently as this week, when they suddenly shrank the estimates for annual PTLDS incidence from up to 20% of reported cases, downward to less than 5%, evidently based on one contested study that much of the Lyme community had already loudly protested to.

When queried about the outrageous difference, I believe the CDC's rep was alleged to have opined that the change was not substantive, or something to that effect. That's potentially about 45,000 cases annually stricken from the books, in theory.

If the CDC and NIH can behave seemingly with impunity regarding Lyme, why would anyone be surprised about what happens with ME/CFS?

 

[Nielk]

Here's the quote:




Of note, no one would say this about an autoimmune disease, cancer, or infection - all of which can affect sufferers diagnosed with ME CFS, and it's that, that keeps patients sick, not the ''mind body connection' as the head of the viral disease branch suggests.

Most bizarre, but there we go.

 

[taniaaust1]

Question - what is prevalence of me/CFS
Reply - just questionnaires - self reported.

Is CDC tracking it? Unger - I guess we are. But it's not a reportable condition bc there's no agreements with states. CDC data of burden justifies more work.
Q - what is reportable? Unger - don't know -

This annoys me that it isnt reportable as after all it is a very serious disease which has been known to appear in outbreaks and to which they dont know much about. So wouldnt it be a sensible thing to be tracking it properlly...

 

[taniaaust1]

To pretend like they're doing something while continuing to do nothing? Isn't that what the CDC does? Strauss and Reeves must be nodding their heads in approval...

I personally believe they only do what they do as they were forced into it due to patient pressure. The CDC is well known for helping cover up ME (1980s Lake Tahoe, and then later on there was that debarcal when they gave the ME/CFS funding to other things), so can we really trust they will get serious and put effort into trying to help sort this illness out.

Its a fools game to believe that a cover up group will do an 180 shift with things while they cant even accept a suitable defination for ME and are so wishy washy and not against promotion of things which are harming some of us eg GET and dont even keep proper records of how many are coming down with ME/CFS. Right now they would miss a ME outbreak just cause they do not take this illness seriously.

 

[taniaaust1]

Here's the quote:




Of note, no one would say this about an autoimmune disease, cancer, or infection - all of which can affect sufferers diagnosed with ME CFS, and it's that, that keeps patients sick, not the ''mind body connection' as the head of the viral disease branch suggests.

Most bizarre, but there we go.

We'll know when they have changed as then they will see how terrible it was to make those comments they do to our community and maybe appologise to us for them. They've pushed the psychological so much that its now offensive to most in the community.

Dont trust them till the day comes when they say "we are sorry for our actions and the views we had".

I doubt they push very sick cancer bedridden, homebound patients to be doing CBT to improve or "manage symptoms better" as they say.