I have an idea...

[SuzE-Q]

Rather than studying MSer's by sending them to Machu Picchu, how about giving us a million dollars and dropping us off at the mall? How about studying the impact of THAT on our health?

What kind of study would you like researchers to undertake on us?

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[Lazarus]

I think it is easy to read a limited report of a study and consider it a waste of time. But all these types of test have changed the way MSers are treated. I am still working my farm because of what has been discovered. Doctors know what we can do/how we can do it and what helps to keep us moving. All conditions are evaluated to find what helps and what does not help.

So I like work like this study reports.

[SuzE-Q]

Hi Linda,

I personally question how a study of 9 MSer's trekking to Machu Picchu can be extrapolated in any way to be beneficial to MSer's as a group. MS is so completely heterogenous and varied. We already know that some MSers can run marathons , etc. and have little or no neurological effects that impact these types of physical capabilities - it depends on how much, where, and how transient any neurological damage is. How does this study inform us further except to highlight the unique capacities of these 9 specific people?

I was being partially facetious, but I daresay that a study of how a lot of money would impact the well being/quality of life of MSer's WOULD be of value if the goal is finding ways to improve the lives of MSer's which the ultimate goal of all research should be, in whatever manner it can be attained.

[agate]

There are so many studies out there that it's very hard to figure out which ones are of any value. This one has the merit of having no funding from any pharmaceutical company, but on the other hand it's a very small study and because it looks very suspiciously as if some people wanted a trip to Machu Picchu and thought up this study as a way of making that possible, I don't know how valuable this study really is.

It's dealing with patients' perception of their illness--whether they came away from the expedition with greater "self-efficacy," for instance.

You hear a lot about self-efficacy if you read these studies, but all it seems to mean is a person's self-confidence. This whole expedition sounds like another version of The Little Engine That Could: I think I can, I think I can.

There's also an "illness perception questionnaire" mentioned as part of the study. "Illness perception"? My perception of my illness varies from moment to moment and day to day. It seems like too vague a concept for any questionnaire to be very useful....

But I don't mean to knock it. It just might have turned up some important information about how people with MS respond to high altitude, for instance. You can read the entire article by following the link SuzEQ provided.

[Lazarus]

"But I don't mean to knock it. It just might have turned up some important information about how people with MS respond to high altitude, for instance. You can read the entire article by following the link"

Hi Agate,
That's just what I was thinking. The altitude might be a focus. I am just pleased that people are thinking and experimenting and gathering data. Every little block of data helps in this puzzle.

Up early and getting ready to pick veggies and load truck for market tomorrow. Altitude will not be high as I will have my nose to the grindstone. Last week a sudden flare left me home with a fully loaded truck, unable to get to market. Here's hoping!
'Ll

[Exacerbator]

I have a better one...

Rather than studying MSer's by sending them to Machu Picchu, how about giving us a million dollars and dropping us off at the mall? How about studying the impact of THAT on our health?

What kind of study would you like researchers to undertake on us?

Only registered and activated users can see links., Click Here To Register...

IMO, these guys missed the boat with their silly PubMed article.

I mean, who reads that rag?

They shoulda made it Reality TV...

[Parsi]

IMO, these guys missed the boat with their silly PubMed article.

I mean, who reads that rag?

They shoulda made it Reality TV...

Obviously some people do read their articles.

But back to SuzE-Q's question in her initial post:

What kind of study would you like researchers to undertake on us?

I wonder if biofeedback of some sort would help us. And what kind.

[SuzE-Q]

I love that idea, Parsi! Biofeedback has good potential to be a tool to help us in many areas, I'd love to see a study explore it, especially in terms of symptoms of autonomic dysfunction.

We know placebo effect is very strong in MS studies...I'd like to see a study of how visualization might benefit us in recovery from attacks, improving wellbeing, reducing pain, etc.

Good luck tomorrow, Linda, hope the weather is cool and the market goes well.

[stillstANNding]

SueZ-Q,

I agree w your proposal on the first page. Cancel Machu Picchu and send me my share of the money.

ANN

[SuzE-Q]

Obviously some people do read their articles.

But back to SuzE-Q's question in her initial post:

I wonder if biofeedback of some sort would help us. And what kind.

It's a start on your question:

Appl Psychophysiol Biofeedback. 2014 Nov 2. [Epub ahead of print]
Effect of Neurofeedback Training on Depression and Fatigue in Patients with Multiple Sclerosis.
Choobforoushzadeh A1, Neshat-Doost HT, Molavi H, Abedi MR.
Author information
Abstract
Depression and fatigue are common symptoms of multiple sclerosis (MS) and are the primary determinants of impaired quality of life in this demyelinating neurological disease. Untreated depression is associated with suicidal ideation, impaired cognitive function and poor adherence to immunomodulatory treatment. For these reasons, systematic screening and management of depressive symptoms and fatigue is recommended for all patients with MS. The objective of this study was to evaluate the effectiveness of neurofeedback in treating depression and fatigue in persons with MS. We conducted a randomized trial with 24 MS patients with primary fatigue and depression. Participants were randomized into two groups: neurofeedback training group (16 sessions of NFB) or treatment as usual. Participants were evaluated at 3 time points (baseline, end of the treatment, and 2-month follow-up) using the Fatigue Severity Scale and Depression subscale of the Hospital Anxiety and Depression Scale as outcome measures. A repeated measures analysis of variance was used to examine differences between the groups. NFB significantly reduced symptoms of depression and fatigue in patients with MS patients, compared to treatment as usual (p < .05), and these effects were maintained the 2-month follow-up (p < .05).
PMID: 25362584 [PubMed - as supplied by publisher]

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[renee]

I KNOW if NY state allowed me to immigrate to the Florida Keys from
December through March (from this God forsaken MS'er environment)
I would feel good, be healthier and stop thinking postal
when we have 24" of snow.

Sign me up for that trial.
Greater mobility for greater activity, more sunlight and lots of
Omega oils in a fish diet. I'll volunteer to be a Hemingway cat lady.
And arms-only swim in the salt water in a demure mermaid outfit.

[Lazarus]

Biofeedback is something I think I naturally do. I have been thinking about it a lot lately as my husband had another near death episode of spiking blood pressure. That landed him in hospital for three days last week.
They got it under control and he is home but spiking episodes have started again....even after the intense hospitalization and med changes. Unknown origin.

He has lost even more weight and is usually unwell although he has periods of normal blood pressure when he looks and feels well. It is an enormous puzzle. He is a hard working farmer, never smoked, never drank and is skinny. I mentioned the idea of biofeedback to him and was just beginning to search biofeedback and sudden spikes of very high blood pressure.

Thanks for bringing it up again...I needed the push!

[SalpalSally]

I talk to my body all the time. Sometimes it even listens.

[Howie]

Yeah, they say the mind is the last thing to go........

[Parsi]

Yeah, they say the mind is the last thing to go........

And I thought it was the first.