Post Exertional Malaise / Workwell Invitation / NIH Focus Group

[Tina]

I received an email from Workwell Foundation stating:

Dr. Mark VanNess and I recently visited the National Institutes of Health (NIH) to present our findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. It was an encouraging trip that resulted in Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extending an invitation to Workwell Foundation to help recruit patients for a focus group on post-exertional malaise. If you are a person diagnosed with ME/CFS and have post-exertional malaise, please consider enrolling in this study. Those of you who have undergone the 2 day CPET and have had an abnormal recovery response know how important it is to identify and characterize the symptom of post-exertional malaise. If you are willing to share your experience with post-exertional malaise, please contact Ms. Barbara Stussman at:stussmanbj@mail.nih.govor call (301) 496-1788. More information is available in the Focus Group Recruitment letter. Together, let's reach out to NIH and help them understand post-exertional malaise.

I assume I received this because I did the 2-Day CPET test at Workwell two years ago.

Anyone else get this? What do you think?

 

[Tina]

I guess my concern is that I remember there being an issue with Brian Wallit? But I am so glad I had the 2-Day test done at Workwell and I am so thankful for their research on PEM. And Workwell sent the invitation. I am torn.

 

[SueS]

Wallitt is part of the ME is psychosomatic group - although to give him credit, I don't think his take is as black and white as some do. I don't believe he thinks we're making it up, but many do. Still, having said that, I wish he wasn't part of this awesome study. I would definitely take part if I could. Sounds good.

 

[SueS]

Hate that part of things, @Who Me? - stuck on the couch with a flabby parasympathetic, stressing about the bottom rung of survival, about the stress of feeding yourself

 

[SueS]

No, it's not fair. It's really not. I hope things are less stressful now and you can recover (well, you know, back to where you were. Of course, I hope you recover completely, right this second, but breath-holding might be dangerous on that score)​

 

[Hello!]

Saw this over in the other place.

I had lunch with J. Mark VanNess, PhD, of the Workwell 2 day CPET fame. He told me that Dr. Walitt pulled together a group of ME/CFS experts, whose names you all know and respect, to advise him on various ME/CFS topics. They had their first meeting shortly before the TDW meeting. Mark said that the first thing out of Dr. Walitt's mouth was something like, "Mark, this is physiologic. We're going to solve this." Their meetings will be ongoing.

I asked Mark if he had any personal connection to the disease. He said that after working with Staci Stevens for 20 years he could see exactly what kind of toll it takes on people. Turns out Staci has ME/CFS.

He also said he considers the 2 day CPET abusive. They do it only when patients insist upon it. He said it can be helpful in building a case for social security disability.

 

[Cort]

People just didn't get the complete story on Wallit. After a paper he co-authored said that ME/CFS was a psychosomatic disorder - they stopped there. Wallit also said in that paper he believed that ME/CFS was a biological disorder (something biological was causing what he called "psychosomatism") and he suggested things like Rituximab and other immune drugs might be able to stop it if they got to it early enough.

He's never promoted a psychological approach to this disease. He's also said he doesn't believe CBT or exercise is very helpful in FM. He has some weird ideas - I grant that - but his research is all biological...He's not what people suspected...he's a bit different.

 

[Cort]

Saw this over in the other place.

Can you give a link to this quote?

 

[Cort]

@Sue Stevenson the initial stressful problem is resolved but these are the kind of people you don't turn your back in and it's the next unknown that's got me losing my mind

I'm going to call my one friend and talk to her about it. She known me for a long time and will understand why I'm losing my mind

What I hate is one minute I'm fine then the
Next I get slammed with a wave of a anxiety and lose it again. Some of this is my messed up brain which makes me incapable of coping. Fun!

No resilience. No steadiness....I think this is because our nervous systems are whacked out. Naviaux said that anxiety, difficulty concentrating, etc. are all the results of a low energy state. I believe him. This high fat low carb paleo diet is definitely helping me. I'm steadier...

 

[Tina]

Thank you all for the input. I think I'm gonna do it. I will let you know how it goes......

 

[Tina]

All,

I received my NIH Focus Group packet. Here is a link to the consent form - see page 2. http://mecfs.ctss.nih.gov/16-N-0058.2.Focus Group.pdf Basically the Focus Group that I am participating in will help the study's architects "identify the best questions to ask about PEM."

This is tough. Like everything with this disease everyone has their own story. Does your PEM come on after running a mile when you used to be able to run 10? Or after washing dishes? Or after the act of bathing? All of these are valid.

Does your PEM come on an hour, 12 hours, 1 day, 2 days post exertion? Does it last 1 day, 5 days, etc.?

Even within the same patient the answers could fluctuate day to day. Some days washing dishes will do me in and some days it is dishes plus a phone call and some days dishes, a phone call and going to my kid's choir performance. My recovery rate fluctuates as well. And there is me the first few years of this illness compared to me today. I have been sick for 9 years.

I guess the architects will interview X number of people and try to glean the similar things. But I think it will be tough.

What could a doctor ask YOU about PEM that would distinguish it from other things? Like trying to describe pain or fatigue. If the doctor you are speaking to does not have a point of reference, they can only compare it to what they know. How many ways can you describe fatigue?

To me I keep coming back around to thinking it comes down to does the doctor believe YOU. Believe that what you are trying to describe is distinctly different than anything YOU have experienced before and that it is debilitating. Simply believe you. They can admit the obvious (at least to me at this point) that they don't know the answer.

I pray constantly that they are able to link this research to a PEM test (that is not so brutal) or blood work. Even if all it does is validate the illness.

 

[SueS]

I wouldn't be surprised if the changeableness of PEM was the main topic of conversation!