Archive for June, 2013

Effective messages

A very worthwhile post at highlights the importance of clarity, accuracy and effective messages in advocacy (applicable elsewhere also).

…Effective communication requires understanding the context and language of the audience. If we are imprecise or inaccurate, the audience will get distracted by our mistakes and lose sight of what we are actually trying to say. In turn, this can lead to the failure of the overall communication through misunderstanding or even outright dismissal. ….

It is worth the time and energy invested to craft a specific, accurate and strategic request that speaks to the context of the audience. …

We owe it to each other and the ME/CFS patient community to get things right. We must speak with precision and clarity about complex topics, while also presenting a strong case for what ME/CFS patients need. It is not an easy thing to do, but it is essential to our collective and ultimate success.”


CFSAC May 2013 videos have all been posted now

Twenty-six days elapsed between the end of the meeting and the posting of these videos. (Typically the time frame has been 4-6 weeks….)

Day 1 May 22, 2013

Welcome & Call to Order – Day 1 (CFSAC Spring 2013)

May 22, 2013, 9:00 – 10:30 AM.

Public Comment on Day 1 (CFSAC Spring 2013)

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, May 22, 2013, 11:45 AM – 1:00 PM. (I think the time is incorrect here. I think the start time should be 10:45AM)

Approve Prioritized Recommendations List – Day 1 (CFSAC Spring 2013)

May 22, 2013, 1:00 – 1:30 PM.

Determination of Medicare Coverage of Test and Treatments – Day 1 (CFSAC Spring 2013)

May 22, 2013, 1:30 – 2:30 PM.

Public Question & Answer on Day 1 (CFSAC Spring 2013)

2:45 – 3:15 PM. Public Q&A.

Committee Discussion and Plans for Day 2 (CFSAC Spring 2013)

3:15 — 5 PM.

Day 2 May 23, 2013

Opening Remarks on Day 2 (CFSAC Spring 2013)

9:00 – 10:15 AM.

Health Insurance Marketplace – Day 2 (CFSAC Spring 2013)

10:15 – 11:00 AM

Public Comment on Day 2 (CFSAC Spring 2013)

11:15 AM – 12:15 PM

Public Question and Answer on Day 2 (CFSAC Spring 2013)

1:30 – 3:00 PM.

Committee Discussion on Day 2 (CFSAC Spring 2013)

3:00 – 3:30 PM.




Committee Discussion (Part #2) on Day 2 (CFSAC Spring 2013)

3:30 – 5:00 PM

Passing along some info:

There is a Kickstarter campaign to raise funds for a documentary on ME(cfs).

The campaign runs until Wednesday July 10th at 12:19am EDT and is being run by Ryan Prior (patient and newly minted journalist) and Nicole Castillo (cinematographer).

Prior recently wrote this article

A promotional video, FAQs and some more info available here:

The intended audience of the film is not quite clear. During this discussion (, Prior seems to indicate that it is for medical students and he also talks about it being for “…teachers, social works, insurers, journalists, politicians, artists and churches”.

We hope that before work begins on this project that the film’s scope and intended audience, etc. are clarified as what needs to be conveyed to insurers is different from what medical students need to know, and is different from what teachers need to know, etc.

There is most certainly a need for top-notch media and film work on ME and we hope these young, enthusiastic people produce a film as good as the very excellent “Voices from the Shadows” (2011) by Josh Biggs & Natalie Boulton or the excellent film “I Remember Me” (2000) Kim A. Snyder.

My Pity Party Because of ME

This was written earlier this year…..

Despite living with this horrible disease for years, ME still manages to find ways to thrust some harsh realizations on us.

Today’s realization has me indulging in a pity party. Complete with tears.
We had an appointment about a possible treatment* for one of my sons. The treatment comes with no guarantees but has a decent possibility of easing some of his worst symptoms.
Since that appointment my son has been too wiped out to discuss or consider the treatment. Because of ME, he has been too wiped out to think.

Today (three days later though even this was pushing it for him to think or discuss things) my son was finally able to tell me that because this treatment is 5 days a week (with about 2 hours travel each day – I would do the driving) for 4-6 weeks – he doesn’t think he can physically handle it.
I suggested we ask about trying it 3 days a week over a longer time period.

He can’t manage that either.

My son knows his physical and cognitive limits better than anyone else, and certainly I don’t want him to push him beyond them.

It feels cruel that this illness is so incapacitating that he can’t try a potential treatment.

A treatment that might help improve his cognitive function and lessen his pain. And yet ME has limited him so much that he can’t handle the intensive treatment schedule.

If my son were a patient with cancer and were too debilitated to try a treatment, people would more readily understand how limited he is.
Even though ME “… has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.” (Hooper and Marshall), most people don’t know it or believe it.

The level of debilitation with ME isn’t improved with something like a transfusion…. instead it just goes on and on with no improvement in function, no improvement in endurance and stamina.

Right now I need to process that my son is too sick for a possible treatment. I need to process that ME obliged him to say no to a potential treatment. I need to process this unwelcome reminder that most people don’t have a clue how disabling, debilitating and extraordinarily difficult live with ME is.

Hence my pity party with tears. (I manage to limit these to about 3 times a year.)

So I will shed tears today.

And then I will focus again on helping to make a difference for people affected by ME.

* To our knowledge this treatment has not been tried in people with ME and for that reason we do not feel comfortable being more specific about it. But rest assured. It is not GET and it is not CBT nor is it related to either one.

While we are waiting…..

During the May 2013 CFSAC meeting ( Dr. Anand Parekh gave a presentation mostly about Medicare ( – a U.S. Government health insurance for people age 65 or older, people under age 65 with certain disabilities, and people of all ages with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a kidney transplant).

While we wait for the posting of materials from the meeting, people in the U.S. may want to check out these information resources about upcoming (2014) changes in health insurance as a result of the Affordable Care Act ACA).    Written for healthcare providers, contains useful information and links to additional information.   A flow chart to help people understand options.    An extensive glossary of healthcare terms

Call to Action – petition to sign and share widely

In May, we told you about this letter ( to Secretary Sebelius, Dr. Koh, Dr. Friedan and Dr. Collins about the need for an appropriate definition for patients with ME.

More details about the letter and FAQs can be found here ( all the issues that we face today, the one issue that has created the most problems are the diverse case definitions associated with our disease. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to not believe that their patients are really sick. Until this issue is addressed, patients will continue to pay the price. This must stop now.”…..)

CALL TO ACTION – A petition ( ) is now available for signing.


Anyone from anywhere can sign.

Please share the petition widely and encourage others to sign also.


Many thanks to Mary Dimmock, Donna Pearson and Erica Verillo for generating the petition.