Reach for the smelling salts: New paper 2018 to prove that abnormal beliefs cause ME disability (!)

[starlily88]

Yes, amazingly, as I look out of my window, the world has suddeny turned from white to green and there is a strange bright orb in the sky,................it is vaguely familiar. For the first time in days, I am going to open the door...............carefully. I think the Beast from the East has eloped with Storm Emma.................all is quiet........and little of the white stuff left................and all the icicles have vamooshed.

countrygirl - thanks for posting that awful post from the Dutch teenager. I assume this is Denmark. Then there is the UK girl taken away from her parents for years - I don't get how in London anyone can be Taken away - like it is Putin's autocratic country - I just don't get it. I lived in London, then Europe for awhile, loved it - they seemed so democratic. with all the problems we have in the states - I am so glad that we can't be taken away - can you believe the horror the parents go thru, and the poor teenager? I just don't get how UK/Denmark is allowed to do this - well in UK there is this one Dr that seems to have huge political backing from NHS (their free health service). But come on, it is now the 21st century - don't any of them read Paul Cheney, Dr. Goldstein - all the great CFS docs here that discovered 2 epidemics of CFS (Incline Village Nevada Lyndonville, New York).. Sometimes I wish we had help from all the people that long ago unfortunately got HIV - and all banded together, raised money, and got all the best HIV researchers in one room - they forced the US government to come up with a cure!!

 

[1gooddog]

So true about HIV. Horrible disease and wouldn't wish it on anyone. However some high profile people put it at the forefront. High profile types brought attention to MS, also. I have not heard of one with CFS. It seems some researchers haven't either.

 

[starlily88]

So true about HIV. Horrible disease and wouldn't wish it on anyone. However some high profile people put it at the forefront. High profile types brought attention to MS, also. I have not heard of one with CFS. It seems some researchers haven't either.

Thanks - didn't know about the MS people - but the guys who had HIV at first - they weren't dying yet - and lots of them were lawyers and high profile people, plus many of them were well connected.

With CFS/ME - once I got it - I was asleep for first 5 years - most of us are in the "AIDS" part right away.
But I truly admire what those guys did, day and night - to force a cure, and they did.

One famous lady with severe CFS/ME in states is Laura Hillenbrand (wrote Sea Biscuit and other famous book) but she is so very tired - the 2nd book she wrote about - was the man who won the Olympics at Hitlers Germany. She talked to him almost daily - and could never meet him.

That is - until the President was going to give him a medal.
So she lives near me - near DC - the Olympic guy, quite old - made a trip to her home - gave her his purple medal of honor - she could not even leave her house.

So she is well known but can't do one thing - how she even writes these 2 best sellers is amazing to me.

NIH money for CFS/ME is so low - it barely shows on chart of moneys given to diseases.
Without Michael J. Fox - no money was given to Parkinson's at all - until he got famous drs to go in front of Congress repeatedly - he started a foundation, raised huge amount of money - without a community grassroots or a very famous person - we will never get funding ------ then most people don't believe in it.

This is just like MS - no one believed in it - look what Montel Williams did for MS. But MS was always called the psychiatric disease where one couldn't move limbs - CFS is still looked at this way in states.

 

[1gooddog]

I was early dx with depression. I argued as bad as I feel physically, of course I am depressed! They kept putting the cart before the horse. One severe attack if dizzy double vision with head pain left me with MS dx. Many MRIs later they said just spots on brain. So many specialists and testing. Went through full round again this past year. Now they say evidence of old stroke causing "weakness on one side". Idiots.
Now I am linking so many issues to CFS. Including heart - found no reason for heart probs I do have. Vision still a major issue.

Rolling over a few times in bed this morn I felt my brain spinning, eyes rolling and felt my heart struggling.

Psyches should be outlawed.

 

[E.man]

I was early dx with depression. I argued as bad as I feel physically, of course I am depressed! They kept putting the cart before the horse. One severe attack if dizzy double vision with head pain left me with MS dx. Many MRIs later they said just spots on brain. So many specialists and testing. Went through full round again this past year. Now they say evidence of old stroke causing "weakness on one side". Idiots.
Now I am linking so many issues to CFS. Including heart - found no reason for heart probs I do have. Vision still a major issue.

Rolling over a few times in bed this morn I felt my brain spinning, eyes rolling and felt my heart struggling.

Psyches should be outlawed.

Heart is a muscle. Mine started struggling recently. Searched on PR and found thread with same symptoms. Am going to try more magnesium to help muscle function. (My ecg was perfect. )

 

[1gooddog]

Heart is a muscle. Mine started struggling recently. Searched on PR and found thread with same symptoms. Am going to try more magnesium to help muscle function. (My ecg was perfect. )

I did have an episode of atrial fun, while hospitalized and on telemetry. I recently wore a monitor for 10ndays. I could feel heart Palos and heart struggling but it did not show up on mon8tor. Had many trips to ER over the years and they found nothing. They don' have a test to feel what I feel. Lol

I have been adding everything up and the needle points to this invisible disease. The one that isn't in my head.

 

[1gooddog]

Atrial fib - darn spellchecker

 

[Sundancer]

Hans Knoop, one of the authors of this bag of *#*#, has left the committee deciding on new guidelines for ME/CFS. We'll hear what's in the new guidelines next monday.

David Tuller wrote about it here:
http://www.virology.ws/2018/03/12/trial-by-error-the-dutch-review-my-trip-bristols-silence/

I have seen a copy of the committee’s draft report (in Dutch), which was distributed to stakeholders in November for comment. The final report based on that draft is scheduled to be released next week. Despite concerns expressed at the beginning of the process that the biopsychosocial forces might dominate the proceedings, the draft report significantly downgraded the current recommendations for rehabilitative therapies, so here’s hoping few or no changes were made in the final version.

The draft stated flatly that, based on the evidence, “the committee sees no reason” for GET to be used in the Netherlands. As for CBT, the draft noted that “a small majority” of committee members believed it could be helpful for some patients. But those in this group also acknowledged that patients also reported having been harmed by the approach, and they suggested that the treatment should be pursued with care. The other committee members objected to any use of the kind of CBT designed for ME/CFS, in part given the therapy’s reliance on the theory of misguided illness beliefs. In any event, this split decision was hardly a full-throated endorsement of CBT.

At least one committee member representing the interests of the CBT/GET cult, psychologist Hans Knoop, was apparently unhappy with this draft report. He was said to be preparing a minority report to counter the findings endorsed by his colleagues on the committee. I am not sure if that remains the plan.

If I wasn't alcohol tolerant, i would take a glass or two


having a sort of PEMcrash I'll log off now, but needed to share this

 

[soofke]

cheers/proost anyway and please tell me that Knoop is indeed pronounced as noob

 

[1gooddog]

Thanks - didn't know about the MS people - but the guys who had HIV at first - they weren't dying yet - and lots of them were lawyers and high profile people, plus many of them were well connected.

With CFS/ME - once I got it - I was asleep for first 5 years - most of us are in the "AIDS" part right away.
But I truly admire what those guys did, day and night - to force a cure, and they did.

One famous lady with severe CFS/ME in states is Laura Hillenbrand (wrote Sea Biscuit and other famous book) but she is so very tired - the 2nd book she wrote about - was the man who won the Olympics at Hitlers Germany. She talked to him almost daily - and could never meet him.

That is - until the President was going to give him a medal.
So she lives near me - near DC - the Olympic guy, quite old - made a trip to her home - gave her his purple medal of honor - she could not even leave her house.

So she is well known but can't do one thing - how she even writes these 2 best sellers is amazing to me.

NIH money for CFS/ME is so low - it barely shows on chart of moneys given to diseases.
Without Michael J. Fox - no money was given to Parkinson's at all - until he got famous drs to go in front of Congress repeatedly - he started a foundation, raised huge amount of money - without a community grassroots or a very famous person - we will never get funding ------ then most people don't believe in it.

This is just like MS - no one believed in it - look what Montel Williams did for MS. But MS was always called the psychiatric disease where one couldn't move limbs - CFS is still looked at this way in states.

I researched Laura Hillenbrand. Amazing story.

I have shared the highlights of her story and the invisible illness with family and friends.

The problem with this disease is not having an ability to go out and advocate due to the illness. I find myself so focused on managing my symptoms that i do not want leave the house, let alone make myself presentable. I find myself not missing what I used to want to do.

We need a well recognized individual who has come down with it, that everyone starts to miss causing the publuc to ask why. It would bring some attention to this disease.

However, I am Not at all wishing this on anyone.

 

[alex3619]

Later I found out how they got to that promised success rate of 80%: All patients that stayed internally for more than three months were added into the calculation. Patients who didn’t last three months were not included. It was in their best interest to throw out anybody that didn’t improve before the crucial 3 month mark, so they could access more funding from the government to continue their work.

This should be considered medical fraud!

 

[Vassie]

I would love to see these researchers go to work. In their bearskin, with a club in one hand and a stone axe in the other, piece of raw meat in their lunchbox.


This is research from the Stone Age.
Let’s move on.



Btw: @soofke
In Dutch ‘Knoop’ means: button, tie, knot, tangle.
‘In de knoop’ means: all tangled up.

The ‘K’ is being pronounced and the rest sounds like ‘nope’. How appropriate.

 

[soofke]

and 'opknopen' means something we'd better not translate

haha @ the lunchbox

 

[TenuousGrip]

I did have an episode of atrial fun, while hospitalized and on telemetry. I recently wore a monitor for 10ndays. I could feel heart Palos and heart struggling but it did not show up on mon8tor.

One of the problems is which monitor they use and how they configure it.

My understanding is that a Zio patch is one of the few -- if not the only -- monitors that logs every single beat, regardless of the rhythm.

I think I've worn four event monitors. Three said "just afib" but the Zio patch logged a very different picture.

May be worth asking your doctor about....

 

[Sushi]

My understanding is that a Zio patch is one of the few -- if not the only -- monitors that logs every single beat, regardless of the rhythm.

I think I've worn four event monitors. Three said "just afib" but the Zio patch logged a very different picture.

I've worn a few types but the one that gave the most information had 3 leads and sent the info to the company by phone. The report showed EKG strips for any period where the monitor detected an abnormal rhythm.

 

[alkt]

cheers/proost anyway and please tell me that Knoop is indeed pronounced as noob

one to many o,s

 

[Vassie]

Haha! No! Let’s not go there.


He would get his panties in a knot if he heard that.

 

[1gooddog]

One of the problems is which monitor they use and how they configure it.

My understanding is that a Zio patch is one of the few -- if not the only -- monitors that logs every single beat, regardless of the rhythm.

I think I've worn four event monitors. Three said "just afib" but the Zio patch logged a very different picture.

May be worth asking your doctor about....

 

[1gooddog]

"I did have an episode of atrial fun, while hospitalized and on telemetry. I recently wore a monitor for 10ndays. I could feel heart Palos and heart struggling but it did not show up on mon8tor."

This exact same thing happened to me in 2012! Many years prior I could feel palps and feel my heart "struggling". I wore a monitor once or twice. Nothing! Even though I could feel it.

In about 2005 I visited ER for severe heart palps. My first heart cath and later treadmill. Nothing! Which is good. The heart palps have continued. I have made several trips to ER and all ecg's normal. I have had multiple full heart workups. A total of 4 heart cath. More tread mills, two or three chemical induced tread mills, many CT scans, and most recently went through all this 6 months ago and again wore a monitor. All this time my heart struggles.

It gets so bad I become winded. It happens when I roll over in bed, or stretch early a.m.

I came to the conclusion the heart IS a muscle. A rather large muscle, that oxygenates the body and I can't breathe because my heart is struggling and there isn't enough oxygen going to the lungs. This happens continually.

I have had cardiologists from the Midwest to WA. All heart monitors were different. The last one I placed patches as directed, it fed to a cell phone device, we were connected, and whenever I felt an event, it was uploaded.

Funny thing is, I have a portable BP monitor that also shows heart palps. This has been approved by my docs, and calibrated to their machines. It will show irregular heart beat. So I guess those monitors are looking for electrical signals, which would be a fib. I suppose because it showed up a few times, (once last Fall causing another ER trip, and a couple of times in the past 10 yrs), that is seldom the problem. It is fatigue..

 

[Sundancer]

I wrote to the lead author:

did you get a reply I wonder?