A Son's Road to Recovery

by Mary Robinson

The Massachusetts CFIDS/ME & FM Association Summer 2000 UPDATE

As I was reading Dr. David Bell's article on the blood volume studies, my mind went back to 3 years ago and the role my son played in this path that our research has taken. My then 13-year­ old son was in the 7th grade and had been very ill with the Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFIDS/ME) for over 3 years. We had tried so many treatments but he just seemed to con­tinue to go down­hill. Dr. Bell was concerned over the fact that my son's ADH level was very low or nonexistent. He called Dr. Peter Rowe to see what ideas he had at the time. Dr. Bell had been very interested in Dr. Rowe's findings involving neurally mediated hypotension (NMH )and florinef treatment. So I was thrilled to have him seeking out his advice concerning my son's treatment.

Dr. Rowe sent Dr. Bell to an endocrinologist who was closer to our area, Syracuse, NY; who had been doing some fascinating work with Orthostatic Intolerance. The doctor's name was Dr. David Streeten, and Dr. Bell had never heard of him. He phoned him on behalf of our son and was intrigued by the work that Dr. Streeten was undertaking, especially the abili­ty to measure a person's blood volume. Well the rest is history. Dr. Bell was so intrigued by the findings of my son's tests that he immediately began choosing others to meet Dr. Streeten and soon Dr. Bell was collaborating on these studies. So what happened to our son, who was so ill that Feb. of 1997?            .

He is doing remarkably well!! Should I call it remission or recovery? I do not know, because with CFIDS/ME there is little that is known and a lot that is unknown. In Dr. Bell's mind it is recovery, and lately I too am leaning in that direction. Following our trip to Syracuse we decided to give florinef and salt another try. It took 6 months to really see an improvement, and we couldn't believe it when it happened. In the beginning of 8th grade he was able to attend 3/4 of the day at school (up from 1 hour at most in 7th grade.) As the fall progressed we waited as we did every fall for the crash. BUT it didn't come. He dropped back to attending school for only a half day due to a decline in his health, but not a 

real crash He had his ups and downs and by spring was up to almost full-days. He was never as sick as he had been the previous year. We were elated!

By the spring of 8th grade he was contem­plating trying out for the summer baseball team. I was scared. What if it sent him into a spiral downhill? With Dr. Bell's encourage­ment I relented and he tried out, and made the team. And he gave it 110% and did great. Not only did he play, he was a starter as a first baseman! The following fall he would enter 9th grade—High School! We were so worried that he wouldn't be able to handle the extra pres­sure, and the classwork. But he wanted to try. He wanted to just start out with a full day, something he had not attempted in years. I could­n't imagine that he could be up by 6 AM each day and attend for an entire day. But we had to let him try, it was his life. And we did.

That was 1 1/2 years ago, and, he was right. Aside from a few minor setbacks last year, never lasting more than 3-4 days, he has remained healthy and symptom free. Last year there were times I worried, times he would have a brief recurrence and be down and out. But on the evening of the 2nd to 3rd day he would pop up, get his homework done and be back to school. We noticed a cycle in 9th grade of this occurring every 3-4 weeks, but he ALWAYS bounced back stronger than ever. He made the JV baseball squad last year, and played ball all summer as a starter.

By the beginning of 10th grade he was ready to go off all his medicines. That meant no more florinef. I was scared to death. I knew that Dr. Bell supported this path, but had offered only respect of my fears of this decision. We again let him follow his heart, and since last August he has been off all medicines. He has had NO setbacks. He got the flu for 3 days in Dec. but it was really the flu—the normal one that you actually recover from and are back to normal after 3 days. He got a bad strep infection last month and I thought, "this is it!" Even Dr. Bell was expecting a bit of a setback, but it didn't happen. He recovered as fast or faster than any other healthy teen. And he is back to a heavy baseball practice schedule.

And academically? He is one of the tops in his class! This boy who had dropped to under grade level in math and reading in the 6th grade, is now back at his peak in 10th grade and scoring ahead of his classmates in these same areas. His teachers praise his efforts and his attitude. And he beams with the ease that he seems to manage these accomplishments. Socially he has many friends, and talents. He is still shy, and always will be, but he is trying new things and has a self-confidence that I don't see in most of his friends. He has battled the dragon and won.

I have been getting a lot of calls from parents of children with CFIDS/ME lately. While I share their feelings of parenting a child with CFIDS/ME, as I am still in the trenches with my 9-year-old's battle with this illness, I also offer them hope by sharing the story of my son's "recovery." I still get goosebumps when I say that word, recovery. And maybe it is the other "R" word, remission. Either way, our boy, our oldest child who was struck severely ill after a tonsillectomy and chicken pox in 4th grade is healthy. Recovery—Remission—does it really matter what we call it? I will never stop worrying about him when he gets a sore throat or a stomachache. I will always pray when he seems more tired than usual, or a headache isn't abated with the usual Tylenol. And I will pray that he never has to tell me that he is crashing. But if I do get that call, I will thank God for every day he has had of blessed good health.

My hope, my prayer for all of our children is a recovery/remission like our son's. May they all have their day when the world is once again theirs to rule!

Permission was granted to reprint this article from the newsletter by Dr. David Bell 'The Lyndonville News." This newsletter, joint effort of Dr. Bell, Jean Pollard, and Mary Robinson, is written for people with CFS/CFIDS/ME, or who have an interest in CFS/CFIDS/ME. Issues cover current research and theories, politics and ramblings, living with CFS/CFIDS/ME and dealing with parenting a child with CFS/CFIDS/ME.

Important Advocacy Announcement

More than ever before, 2015 has been a year that has brought fresh hope to Myalgic Encephalomyelitis (ME) patients. The Institute of Medicine (IOM) and NIH Pathways to Prevention (P2P) reports confirmed the neglect and disbelief that have held the disease hostage for decades and strongly recommended action to improve patient care. Publications from Stanford, Columbia and Haukeland (Norway) Universities brought new insights into the biology. World-renowned scientists have joined the fight. Stories about severely ill patients like Ron Davis's son have created more public awareness. And the Tuller series brought greater exposure to the concerns with the PACE trial and psychogenic theories.

For the first time, there is a sense that we have huge opportunities to change the future for ME patients. And just as importantly, there is a sense that if we want to turn those opportunities into reality, then we need to find new ways to work together across the community to increase the impact of our voices.

Read more: Important Advocacy Announcement

Does Advocacy Work, P2P Edition - Good News and Bad News

by Charmian Proskauer
President, Massachusetts CFIDS/ME & FM Association
April 8, 2015

What's the scorecard on advocacy with federal agencies? Does it work? At this point, the review has to be mixed.

Let's take NIH's on-going Pathways to Prevention program for ME/CFS, run from the Office of Disease Prevention (ODP) as an example.

The Program, Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, was announced near the end of 2013. A Working Group was formed to consider what questions the study should consider, and met in early January, 2014. The Working Group included several prominent ME/CFS clinicians and researchers, as well as a patient representative. This group also planned the agenda and created nominated speakers for the Workshop. GOOD NEWS

In August 2014, after the Workshop Agenda was published, our Association along with 6 others sent a letter requesting a change to the Agenda to include a fuller discussion of case definitions. The final Workshop Agenda limited the case definition discussion to a single 20-minute presentation by Dr. Lenny Jason. GOOD NEWS to have this presentation by an acknowledged expert in case definition; BAD NEWS that it was still only 20 minutes.

An outside agency, Pacific Northwest Evidence-based Practice Center, under contract to the Agency for Healthcare Research and Quality (AHRQ), prepared an Evidence Report. This was first published in draft form with a 4-week period for public comments. Many advocates submitted comments. In addition, the report was reviewed by a panel of experts. GOOD NEWS

The final Evidence Report (also referred to as the "AHRQ report") was made public on December 9, 2014, the same day the Workshop took place. While the final Evidence Report mentioned the many comments submitted, it did not discount findings form the controversial PACE study, which many advocates had requested. The workshop attendees, and the Panel, would not have had time to review the final report prior to their in-person public meeting. BAD NEWS

The final Evidence Report states on p. 11 of the PDF: "The draft report was further edited in response to these [expert] reviews and [public] comments, and the specific responses were outlined in a table that will be made available after AHRQ posts the final systematic review on the public Web site." To date, this table has not been posted. BAD NEWS

The Workshop was held on Dec. 9-10, 2014. The study panel (5 non-experts) was announced just before the workshop took place. It was a public meeting, and was also videocast live. The videocast and other resources were archived and are available to the public. GOOD NEWS

The draft report was published approximately one week later. While the report contained many good points, and for the most part accurately relayed what the experts presented during the workshop, there were a number of major errors. Furthermore, the treatment recommendations, based heavily on the AHRQ Evidence Report, which explicitly outlined the limitations of the evidence and recommended that future studies not include patients selected with the Oxford case definition (which was used in the PACE trial), pointed prominently to Graded Exercise Therapy (based on the PACE trial), as well as Cognitive Behavioural Therapy and other "biopsychosocial"approaches as primary treatments. BAD NEWS

The original public comment period on the draft Workshop report was scheduled for 2 weeks from date of publication, which would have been from around Dec. 17 to Jan 1st. At the request of a number of advocates including our August letter (and perhaps an exercise of common sense) the comment period was extended to January 16, 2015. GOOD NEWS

In response to queries from advocates, ODP at first said it would not retain public comments, but simply pass them over the the panel. BAD NEWS

This stance was later changed.  Advocate Jennie Spotila offered to post a copy of all public comments on her blog, if advocates sent them to her for posting. The P2P library eventually contained well over 70 entries from individuals and patient organizations, many of them lengthy and well-referenced. The themes expressed in these comments were very consistent. A strong and uniform message emerged from our community. GOOD NEWS

The publication of the Final report (from the study panel) was announced for April 14, 2015. Prior to that, advocate Jennie Spotila filed a Freedom of Information Act (FOIA) request, asking to see all comments form the public which were filed by the deadline of January 16. When the 308 p. PDF was provided, Jennie noticed that comments from several sources were not in it, including those from our own Association and those from the Chronic Fatigue Syndrome Advisory Committee. BAD NEWS!

Jennie filed a follow up FOIA request requesting the missing comments. Shortly after that, this notice was posted on the P2P ME/CFS web page:

"The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to ensuring that all public comments have been considered, we have paused the publication process in order to give the panel time to consider the new information and determine if changes are needed before the release of the final report. Once the panel has been able to deliberate, the publication process will resume, and the ODP will announce a new timeline on our website."

Jennie has written about this "P2P Mistrial" in her blog.

Our Board sent a letter to the Office of Disease Prevention, expressing our outrage that the panel was not given the opportunity to fully consider ALL comments submitted by the public, and strongly urging that the panel be reconvened in person to do so. You can read our letter here. We have also urged others to write to ODP. It is not clear at this point how many comments were not passed on; "one set" includes at least 3 submissions that we know about, but there could be many more. To date there has been no response from ODP. We will provide an update when we have further news to report.

So, Does Advocacy Work?  It can help to keep our public agencies honest - that's the GOOD NEWS. The BAD NEWS is that this kind of work is tedious and time/energy consuming, which seems a terrible burden to place on our community.

Response from Office of Disease Prevention April 14 2015

This is the text of the letter we received from the Office of Disease Prevention on April 14th, in response to our letter of April 3rd.

Dear Ms. Proskauer:
Thank you for your message and interest in the NIH Pathways to Prevention workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
In response to your comments and questions:
The recently released report from the Institute of Medicine should also be reviewed and considered by the panel. 
It is beyond the scope and charge for this panel to consider and incorporate the Institute of Medicine (IOM)’s recommendations within their report because the IOM report was released after the P2P workshop.  The panel can only consider materials available at the time of their workshop.
1.  How will the missing comments be retrieved? Can they even be found? (I would be happy to re-submit our comments if you cannot find them.) How many comments were not passed on, and from whom were they? (Would obtaining this information require another FOIA request?)
There were 46 comments that were inadvertently misplaced and not sent to the panel originally. All comments received by the NIH Office of Disease Prevention (ODP) are now on file and we have confirmed that all comments have been forwarded to the panel for consideration. The ODP cannot release the contact information for the individuals and organizations who submitted the comments because we did not obtain their permission to do so. The ODP is committed to ensuring that all public comments have been considered by the panel before completion of their final report. That is why we paused the publication process in order to give the panel as much time as it needs to thoroughly review and consider all submitted comments before the release of the final report. Once the panel has finished its deliberations, the publication process will resume, and the ODP will announce a new publication schedule on our website.
2.   Exactly what process will be used by the panel to reconsider their revision in light of these comments?
The panel chose to review the additional comments via a teleconference that they arranged.
3.  What actions will be taken to prevent any future occurrences of an error like this? How can the public be assured that their input will be received and carefully considered? 
For future P2P workshops, public comments will be posted online as they are submitted to enhance the transparency of this process and to ensure that all comments are received by the panel in a timely manner.
Jody Engel
Jody Engel, M.A., R.D.
Director of Communications
NIH Office of Disease Prevention