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CDC Multi-site Study – An interview with Beth Unger

The CDC multi-site clinical assessment of CFS/ME is now underway, and Bob took the opportunity to interview Dr Beth Unger, the lead scientist in charge. The outcomes of this significant study are likely to be widely influential and the means by which the CDC employ objective measures has become something of a hot potato, especially in relation to exercise testing…

Elizabeth, R. Unger, PhD, MD Chief, Chronic Viral Disease Branch

Elizabeth, R. Unger, PhD, MD
Chief, Chronic Viral Disease Branch

The CDC department that oversees chronic fatigue syndrome, under the leadership of Dr Beth Unger, has begun a large study using data from 450 ME/CFS patients, collected at seven well known clinical sites across America (see below).

The CDC website describes the study as a “multi-site clinical assessment of chronic fatigue syndrome (CFS) to characterize patients with CFS or myalgic encephalomyelitis (ME) in clinical practices of clinicians with expertise in CFS/ME.”

“The study started in 2012 and aims to enrol 450 patients. Any patient (aged 18 – 70 years) that is managed or diagnosed with CFS, post-infective fatigue (PIF) or myalgic encephalomyelitis (ME) at any of seven participating clinical sites is eligible for participating in the study.”

No specific official clinical criteria (such as the Fukuda CFS criteria or the Canadian Consensus Criteria for ME) are required for patient recruitment. Instead, the participating clinicians are asked to use their own clinical judgement to include CFS/ME/PIF patients in the study.

The CDC website says: “The study will examine the differences and similarities between CFS/ME patients in the clinical practices of experienced CFS clinicians.” “The data collected using a standardized approach from expert clinical practices will be used to address the CFS case definition. Ultimately, this study aims to improve how we measure illness domains of CFS. This may allow patients to be sub-grouped to improve therapy and allow the underlying biology to be discovered.”

On paper, the CDC seems fairly ambitious in its aims: 

“CDC is fully committed to working with the CFS Advisory Committee (CFSAC) and DHHS to develop consensus about the case definition and name of this devastating illness. The need is not only for a case definition but also for reproducible standardized approaches to applying it, as well as for biomarkers to refine subgroups within the overall CFS patient population.”

The first stage of the study collected subjective measures from the patients, including clinical assessments and medical histories.

Dr Unger has said that ‘biologic’ measures are crucial to further characterize and sub-group patients, and has indicated that the early stages needed to be self-report measures in order to test the logistics of such a large study. She has said that the logistics were found to be successful in the first stage, and that they are now moving on to the second stage.

The second stage will enroll paediatric/adolescent CFS patients, as well as recruiting the controls (healthy people and people ill with other fatiguing illnesses), as comparison groups.

The devil is in the detail…

Dr Unger seems to be taking a robust evidence-based approach to defining the illness, illnesses, or subsets. If the study is done well, it could turn out to be a ground-breaking project, but if done badly, it could be worse than meaningless. If objective biological tests are not included in the long-term, then this might turn out to be a large but very shallow study, costing a lot of money and not providing any ground-breaking answers.

Depending on its ultimate design, and its implementation, this large study could potentially be ground-breaking. Extensive objective and biological measures are not yet included in the study, but the study is evolving, and Dr Unger explains that the current study may pave the way to, and enable, future biological testing in better defined cohorts.

However, strong feelings of discontent have been expressed – by patients and advocates – over Dr Unger’s decision not to include extensive objective or biological testing from the start. One such objective test that has been called for, is a two-day cardio-pulmonary exercise test (CPET), which seeks to measure cardio-pulmonary efficiency (by measuring values such as: effort, energy expenditure, oxygen intake, and heart rate) when patients use an exercise bicycle in two separate tests on consecutive days.

Hooked up for a CPET

Hooked up for a CPET

In small studies by Dr Christopher Snell and colleagues, CFS/ME patients were seen to have fairly similar CPET results to sedentary healthy controls on the first day’s test. But, significantly, for one of the efficiency measures, the healthy controls improved in performance in the second day’s test, whereas the performance among the CFS/ME patients was substantially worse on the same test.

This has been seen as a means of objectively demonstrating the symptom of post-exertional malaise – considered a key symptom of CFS/ME – and Dr Snell has said that this abnormal response to exercise is something he has seen only in these patients (see: Repeat Test Reveals Dramatic Drop in Exercise Capacity).
 
Dr Snell’s latest research study was small, but these intriguing initial results, if replicated by larger studies, may well confirm that 2-day CPET testing is a useful biomarker for the disease.
 
Members of the Chronic Fatigue Sydrome Advisory Committee (CFSAC) have suggested that Dr Unger contact Dr Snell to discuss the merits of a two-day CPET, which she has now done. We do not know the extent to which they discussed his research, or what will occur as a result, but Dr Snell has hinted that Dr Unger appeared to be open minded to including such a test at some stage in the future – indeed she does not rule it out in the answers provided to my questions (below).
 
The plans for the CDC’s study currently include a one-day CPET test, along with 48-hour post-exertional cognitive tests and post-exertional self-reported illness and symptom scores. Dr Snell has indicated that he believes there may be  merit in using the proposed post-exercise cognitive tests and post-exercise symptom scores. It is possible that these measures may demonstrate post-exertional symptom exacerbation unique to CFS/ME patients, or a subgroup of CFS/ME patients.
 
But it seems clear that Dr Snell and many patients are of the opinion that a two-day CPET should be included. The CDC study is of such significance that it seems a wasted opportunity not to do so.

Interviewing Dr Unger

There is limited official information available about the study, so I recently put some questions to the CDC. In reply, Dr Unger explained that she considers it important to first of all collect a comprehensive range of subjective data that will enable, stimulate, and pave the way for further studies using biological testing.

The questions and answers are quoted below, exactly as they were asked and responded to. The answers were received on December 19th, 2013.

1. What are you ultimately hoping to achieve from your study e.g. to create a new clinical or research diagnostic criteria, to determine biomarkers, to define subsets, to discover any research leads?

We hope that this study will help determine the best measures of the major illness domains of CFS.  These include measures of function, pain, fatigue, sleep, and additional symptoms cited in various case definitions.  These measures are needed in order to determine if patient subsets can be identified that will correlate with biologic measures that could guide therapy. 

These measures are also important to assist researchers in selecting patients that are better defined, a feature of study design that will help the field achieve replication and validation of results.  In addition, we hope that our study will contribute to developing outcome measures needed for clinical trials. The data collected in this study will be useful in evaluating current and proposed diagnostic criteria, but creating new CFS case definition criteria is not a goal.

Our study will also provide descriptive analyses of the clinical management of CFS by the participating experts.  Information on medication and other therapeutic and management tools could begin the process of developing evidence-based guidance for best practices for CFS care.

2. What data are you collecting about the patients? What biological/objective testing are you carrying out, or are you likely to add to the study? Are you collecting any tissue samples, and if so, what tests will you perform on the samples? If you are collecting DNA, what are you looking for in the DNA e.g. genetic predisposition?

 In the first stage of the study we are collecting standardized self-reported measures of CFS illness domains.   These include measures of function, pain, fatigue, sleep, and additional symptoms cited in various CFS case definitions.  We are also using data abstraction forms to collect information from study participants on the history of the present illness, detailed medical history, medications, lab test results, family history, infection and immunization history, and physical examination. 

In this second stage of the study, which began November 2013, we are collecting saliva to measure the wakening cortisol response.  We are also collecting blood to create a small biorepository of DNA and RNA that could be used to replicate promising findings from other groups.

3. Is the methodology of the study evolving as you proceed i.e. are you adding more elements to the study as you feel you need to? Is the study open ended? How will you know when your study is complete i.e. what data will you have collected? what type of conclusions will you have made?

The study methodology is evolving. Follow-up of patients involved in the first stage of the study will be continued in the second stage using a smaller set of questionnaires that will give data on disease course and on how well the instruments measure changes in their health.

The second stage will enroll pediatric/adolescent CFS patients. In addition, we are enrolling healthy people and those ill with other illnesses that include fatigue as comparison groups. Other components that are being added in the second stage include measures of cognition and exercise capacity as well as response to exercise. 

The study is currently being conducted under a contract that allows one-year extensions for up to five years if funds are available. While data collection will end when the contracts are closed, analysis and publication of the findings will continue. The study is expected to provide data to support new initiatives throughout the CFS research community.

4. Are you seeking to have an over-arching definition of fatiguing illnesses or is your focus on well defined subsets? Are you seeking to attempt to define subsets of the current Fukuda CFS diagnosis? Do you consider that post-exertional malaise (aka post-exertional neuro-immune exhaustion) i.e. delayed and prolonged post exertional symptom exacerbation that is not relieved by rest, could potentially define a distinct subset of Fukuda CFS? Are you actively looking for such a subset?

A new definition of CFS is not the objective of this study. We do believe the study will help identify subsets of CFS patients, and equally important, will provide the tools for clinicians and researchers to use to identify similar subsets. An essential feature of this study is that we did not use a case definition to enroll patients. The study relies on the clinical expertise of those physicians who have extensive experience in caring for those with CFS. 

Post-exertional malaise or post-exertional neuroimmune exhaustion is an important characteristic of CFS with no currently validated measures. We believe that the data collected in our study will help identify the best options for either measuring post-exertional malaise, or for identifying measures that correlate with this characteristic.

5. I have heard patients and advocates expressing concern that it is very important that your exercise testing is carried out over two days, but you have highlighted the practical difficulties of such a study. Could a small exploratory two-day testing program be carried out, with patients who are safely able to participate, to see how useful the results are?

Our primary objective is to measure the exercise capacity in as many of the enrolled patients as possible using a standardized protocol, and to monitor the post-exertional response for 48 hours with online cognitive testing and visual analogue scales of fatigue, pain, and symptoms. 

Maximal cardio-pulmonary exercise testing (CPET) with one day of testing and 48-hour follow-up of cognition was developed in consultation with Dr. Gudrun Lang (cognition), and Drs. Dane Cook and Connie Sol (exercise). We chose the one-day test so that more patients could be tested at multiple sites with rigorous standardization. 

The two-day test would require an additional overnight stay for those patients who travel long distances to attend clinic, and excludes those who are most severely affected because of the heavy physical toll. In developing the protocol, we strived to find a balance between testing that would yield meaningful data in the broadest representation without placing an unnecessary burden on the patients.

Results of the study will guide the next steps.  It may be that a trial of a two-day protocol could be indicated for some patients or to explore other aspects of the illness.

6. Over the years, the CDC has not always been popular with the ME/CFS community. Is there anything you can say that will provide patients with confidence in the CDC’s current program and with your department’s general attitude towards the patient population and the illness? Is the CDC making a fresh start with regards to ME/CFS? 

CDC’s CFS Program is committed to reducing the clinical morbidity associated with CFS while at the same time improving the quality of life for CFS patients and their families. We are focusing on projects addressing the most pressing needs associated with CFS. During our meetings with  CFS advocacy groups, we heard repeatedly about the need for improved health care services for CFS patients.

We currently have two types of initiatives related to this identified need. First, our study to collect data on CFS patients in multiple clinical practices; and second, developing educational materials, particularly targeted to healthcare providers, to advance the recognition and treatment of CFS.

Additional Information:

The seven participating clinical sites:

  • Pain and Fatigue Study Center, NY ………….. (Lead clinician: Dr. Benjamin Natelson)
  • Center for Neuro-Immune Disorders, FL ….. (Lead clinician: Dr. Nancy Klimas)
  • Open Medicine Clinic, CA ……………………….. (Lead clinician: Dr Andreas Kogelnik)
  • Sierra Internal Medicine Associates, NV …. (Lead clinician: Dr Daniel Peterson )
  • Fatigue Consultation Clinic, UT ………………. (Lead clinician: Dr Lucinda Bateman)
  • Hunter-Hopkins Center, NC …………………….. (Lead clinician: Dr Charles Lapp)
  • Richard Podell Clinic, NJ …………………………. (Lead clinician: Dr Richard Podell)

Summary of Objective Tests:

Current or proposed objective testing and biological sample taking:

  • One-day maximal cardiopulmonary exercise testing (CPET); with 48 hour post-exercise online cognitive testing (and also pain and symptom questionnaires) to attempt to identify post-exertional changes.
  • Saliva to measure morning (wakening) cortisol response
  • Blood samples to create a small bio-repository of DNA and RNA that could be used to replicate promising findings from other groups. 
  • Natural Killer (NK) cell function and counts; sample for serum archive.
  • Blood sampling for gene expression changes.

Possible future tests (i.e. tests that have not been proposed but not ruled out):

  • Two-day CPET. 

Further Reading:

Multi-site Clinical Assessment of CFS
CDC website  (click here)

Redefining ME/CFS? CDC Chief Reveals First Fruits Of Multi-Center Doctor Study At FDA Stakeholder Meeting
Simon McGrath, 11 May 2013  (click here)

Opportunity Lost
Jennie Spotila, 10 September 2013  (click here)

Discussion of Dr Snell’s recent two day CPET study
Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity
Simon McGrath, 29 Jul 2013  (click here)

Advocates Rebuffed: CDC Whiffs On Opportunity to Prove Reduced Exercise Capacity Present in Major Chronic Fatigue Syndrome Study
Cort Johnson, 15 September 2013  (click here)

Phoenix Rising Forum Discussion – New Dr Snell paper on exercise and CFS  
(click here)

CFSAC committee meeting – Spring 2013
Beth Unger discusses the CDC’s multi-centre study – YouTube Video:
(Click here to view video on YouTube)

CFSAC  committee meeting – Spring 2013
Stage 2 of Multi-site CFS Study – YouTube Video:
 
 
[appeal]?

{ 91 comments… add one }

  • taniaaust1 February 4, 2014, 10:16 pm

    oh boy.. sorry all, the two above posts above over state disability service werent suppposed to be on this thread (they were meant to be on my thread). Brain fog. I'll get a mod to move them.

  • alex3619 February 4, 2014, 10:40 pm
    Ember

    Can you articulate Dr. Unger's study design? Is she proceeding without research questions or hypotheses? Notice that she rejects Dr. Klimas' suggestion in the first 75 seconds here:

    This quotation from “Research questions, hypotheses and objectives” may provide a useful commentary on Dr. Unger's "data-driven" approach:

    A good hypothesis should precede and drive a study's data collection.

    Chicken and egg. What data do you collect, by what methods? In order to figure that out you need some idea of what to look for: one or more hypotheses. There are millions of possible tests, nobody is going to do them all.

    There is a difference between an exploratory study, in which hypothesis testing is not the goal, and a rigorous study of mechanisms, treatment etc, in which hypothesis testing should be the goal. Exploratory studies are about getting data, yet as I said you can't do that unless you have some notion of what data you want: you have to have some kind of hypothesis.

  • Ember February 5, 2014, 12:46 am
    alex3619

    Exploratory studies are about getting data, yet as I said you can't do that unless you have some notion of what data you want: you have to have some kind of hypothesis.

    This seems to have been Dr. Unger's research question: “The question being asked over and over is, how do the patients differ in people's practices…. Is that why the findings in the laboratory are not always translatable?” To investigate the presumed heterogeneity among practices, Dr. Unger undertook “to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME (sic), the 1994 CFS definition and the newly proposed International ME definition.”

    But Dr. Unger's interim analysis showed more heterogeneity within the patient population than among the clinics, and her questionnaires failed to identify robust subgroups:

    This is just an interim analysis, and I would like to emphasize that I think that this interim analysis so far has shown us that there is a heterogeneity in the CFS population as a whole. There is a little bit between clinics but more in the patients than between clinics. This is also giving us a hint that phenotypic measures themselves may be limited in their ability to distinguish robust phenotypes or robust subgroups and that's why we're proposing to expand this study to some other measures, and it could very well be that other biologic correlates will be needed in order to better define subgroups.

    Nevertheless, Dr. Unger is refusing to use credible biogenic correlates to better define subgroups.

    In addressing the IOM Committee, Dr. Unger presented her study's objective this way: “To describe what the patients in these clinical practices actually look like. And so to provide data both to address how case definitions might work as well as to identify subgroups that we could find from these patients.” Dr. Unger freely expresses her opinions about how case definitions might work:

    I sit here and I believe that there is no one case definition that is going to get us to homogeneity in this illness. It is way too diverse. We have to understand how to handle that diversity. I think we handle it by giving clinicians the tools to understand the full spectrum of the illness. Therapies can then be targeted to the various aspects of the disease. It’s a broad umbrella with various degrees of severity.

    But beyond describing "a broad umbrella with various degrees of severity," and despite having the relevant data, Dr. Unger isn't prepared to use either Fukuda, the ICC or the CCC to better characterize her study's cohort.

  • Bob February 5, 2014, 12:59 am
    Ember

    But beyond describing "a broad umbrella with various degrees of severity," and despite having the relevant data, Dr. Unger isn't prepared to use either Fukuda, the ICC or the CCC to better characterize her study's cohort.

    Unger is pro-actively looking for subgroups based on the data. I'd be surprised, and disappointed, if she wasn't using existing CFS & ME definitions to see if her data matches those subgroups. However it works out (i.e. if the data either matches or doesn't match the existing criteria) then that will give us helpful new information. (As long as the study is carried out competently, honestly and comprehensively, which isn't guaranteed of course.)

    Beth Unger

    I sit here and I believe that there is no one case definition that is going to get us to homogeneity in this illness. It is way too diverse. We have to understand how to handle that diversity. I think we handle it by giving clinicians the tools to understand the full spectrum of the illness. Therapies can then be targeted to the various aspects of the disease. It’s a broad umbrella with various degrees of severity.

    That's exactly what we want her to do, isn't it?

  • Bob February 5, 2014, 1:27 am

    I had forgotten the content of this video. I think perhaps it's the best review of the study that Unger has presented so far:
    http://www.tvworldwide.com/events/f…_archive.cfm?gsid=2251&type=flv&test=0&live=0

    @Simon reviewed it in his health-rising article:
    http://www.cortjohnson.org/blog/201…c-chronic-fatigue-syndromemulti-clinic-study/

    Unger starts the presentation @86.00

    Some snippets:

    Collected clinical data includes:
    Basic Demographics.
    History of illness (e.g. age of onset.)
    Medical history.
    Lab and other diagnostic tests.
    Family history.
    Infection/immunization history.

    Mental health and role emotional scores are 'preserved' in CFS in all of the clinics. (i.e. CFS patients have normal outcomes for mental health scores.) (This is a novel conclusion for the CDC.)

    Unger is testing the DePaul Symptom Questionnaire, along with the various diagnostic criteria.

    Unger mentions that the study demonstrates that the MFI general fatigue scale is not useful for research into CFS because 40% of patients had the maximum possible score.

  • Ember February 5, 2014, 1:44 am
    Bob

    I'd be surprised, and disappointed, if she wasn't using existing CFS & ME definitions to see if her data matches those subgroups.

    In the first 75 seconds of the IOM Committee's Q & A, Dr. Unger indicates that she isn't prepared to use existing CFS & ME definitions. She claims that she doesn't know “how to set the criteria for each of the various points of the disease criteria. In other words, there's not a cut point for any of these.”

    Her description of “a broad umbrella with various degrees of severity” isn't supported by the ICC. It identifies a subgroup that needs to be removed based on much more than severity. Dr. Unger would risk identifying such an ME subgroup were she to use the 2-day CPET.

  • Gemini February 5, 2014, 3:58 am
    Bob

    Yes, she [Dr. Unger] must move on to including comprehensive biomedical testing, and I hope she will, quickly. If she doesn't then the trust of the patient community will not be gained…Anyway, these are just my own opinions.

    Agree. Would like Dr. Unger to build on the existing science & incorporate biomarker candidates in her study.

    NIH State-of-the-Knowledge Workshop (2011) identified 5 biomarker candidates [with qualifications]:
    1. NK cell function [methodological issues?]
    2. Perforin [by flow cytometry, a surrogate for NK cell function]
    3. Dipeptidyl peptidase-4 (CD26) [an excellent cell membrane biomarker candidate]
    4. Neuropeptide Y [correlates with severity of illness]
    5. Cytokine panels

    Byron Hyde's SPECT Scan test & the Duffy/Komaroff EEG Spectral Coherence test are additional candidates.

    Perhaps a group here on PR could compile a biomarker list to suggest to Dr. Unger?

    Sources:
    1. "NIH ME/CFS State-of-the-Knowledge Workshop Report,""Diagnosis & Biomarkers" section, p13-4, April 7-8, 2011
    http://orwh.od.nih.gov/research/me-cfs/pdfs/ORWH_SKW_Report.pdf

    2. "Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome," Bryon Hyde, MD, Second Edition, 2010
    http://www.lulu.com/us/en/shop/byron-hyde-md/missed-diagnoses-myalgic-encephalomyelitis-chronic-fatigue-syndrome-second-edition/paperback/product-18463888.html

    3. http://www.ncbi.nlm.nih.gov/pubmed/21722376

    Edited to add links to sources

  • Bob February 6, 2014, 2:52 am

    This has just come through on the CFSAC email list…

    MARK YOUR CALENDARS:

    CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call

    Tuesday, February 25, 2014

    3:00 pm * 4:00 pm EST

    Call number: 1-800-369-3365
    Participant Code: 1471493

    Meeting Agenda

    3:00pm Welcome and Telephone Overview

    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention​

    3:15pm "CFS and Cognitive Function"

    Gudrun Lange, Ph.D.
    Consultant Clinical Neuropsychologist
    Pain and Fatigue Study Center
    Beth Israel Medical Center, NY, NY
    Professor, Department of Physical Medicine and Rehabilitation Rutgers University​

    3:45pm Questions from CFSPCOCACall Mailbox for Guest Speaker and CDC

    Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.

    Please note that questions for the Guest Speakers and CDC can be submitted only via email at:
    CFSPCOCACall@cdc.gov
    This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls.

    If you would like to be added to the call list, please send an email to: CFSPCOCACall@cdc.gov

    Contact for CFS PCOCA Conference Call: CFSPCOCACall@cdc.gov
    The CFSAC Support Team cannot answer questions about this upcoming call.

  • Bob February 6, 2014, 3:03 am
    Ember

    In the first 75 seconds of the IOM Committee's Q & A, Dr. Unger indicates that she isn't prepared to use existing CFS & ME definitions. She claims that she doesn't know “how to set the criteria for each of the various points of the disease criteria. In other words, there's not a cut point for any of these.”

    I wonder if Dr Unger has seen Lenny Jason's recently published research that distinguishes CFS, CFS/ME and ME patients from healthy controls by using frequency and severity of certain symptoms:
    http://forums.phoenixrising.me/inde…e-learning-and-featu.27975/page-2#post-427215

    Ember

    Her description of “a broad umbrella with various degrees of severity” isn't supported by the ICC. It identifies a subgroup that needs to be removed based on much more than severity. Dr. Unger would risk identifying such an ME subgroup were she to use the 2-day CPET.

    Agreed. But she is correct to say that the CFS cohort is a broad umbrella, etc. (And her remit is to study the entire CFS population.)

    But even if looking purely at the CCC or ICC population, then there will probably be heterogeneity. We don't know if all ICC patients have the same disease. All we know is that the characteristics of their illness/es are similar. Data and research is needed to investigate it further.

    I absolutely agree that the CDC needs to include proper and comprehensive biomedical research in its study, including all the tests & research that have been mentioned in this thread.
    I'll be deeply frustrated if they haven't started doing this before the end of 2014. But I think it seems quite sensible for them to gather clinical and demographic data for such a large study before they move towards collecting more specific biomedical research data.

    I also agree that Unger's use of language, apparent failure to engage with the community, and an apparent lack of insight into the differences between CF and ME, is deeply disappointing and frustrating.

    We need the ME research community to attempt to use data to distinguish subgroups.
    The CCC/ICC are a helpful guide while more research is being undertaken.
    They're helpful, but they are not going to lead to answers for us in themselves.
    We need more research and more data.
    I'm hoping that Unger is focusing on PEM and other symptoms used in the CCC/ICC, to measure her data against in attempt to distinguish subgroups.
    And I hope that she understands the difference between fatigue and ME. Otherwise it's going to be another dead-end at the CDC.

  • Bob February 6, 2014, 12:14 pm

    Here are some extracts from the interview that address some of the issues we've been discussing in this thread…

    Dr Unger

    The data collected in this study will be useful in evaluating current and proposed diagnostic criteria…

    Dr Unger

    We do believe the study will help identify subsets of CFS patients, and equally important, will provide the tools for clinicians and researchers to use to identify similar subsets.

    Dr Unger

    Post-exertional malaise or post-exertional neuroimmune exhaustion is an important characteristic of CFS with no currently validated measures. We believe that the data collected in our study will help identify the best options for either measuring post-exertional malaise, or for identifying measures that correlate with this characteristic.

  • Gemini February 6, 2014, 4:14 pm
    Bob

    I absolutely agree that the CDC needs to include proper and comprehensive biomedical research in its study, including all the tests & research that have been mentioned in this thread. I'll be deeply frustrated if they haven't started doing this before the end of 2014.

    Dr. Unger in her presentation Dec 2, 2013 about the CDC multi-site study is reported to have said, "Results need to be combined with biomarkers." [Ref. Dr. Ros Vallings, NCNED Centre Opening Ceremony]

    A question to ask Dr. Unger on her upcoming Feb 25, 2014 conference call is: "Which biomarkers & when?"

    I hope Dr. Unger was taking notes during this Ceremony when Sharni Hardcastle(Gold Coast AUS) described researchers making home visits to collect blood samples from severely ill patients. It was reported: "Follow-up with both moderately and severely ill patients showed that NK activity in the severe remained significantly far worse…She [Hardcastle] stresses the importance of looking at severity both clinically and in the laboratory."

    Speaking of biomarkers, anyone know the status of Dr. Tate's work on developing a diagnostic test?

  • SOC February 6, 2014, 10:46 pm
    Gemini

    Dr. Unger in her presentation Dec 2, 2013 about the CDC multi-site study is reported to have said, "Results need to be combined with biomarkers." [Ref. Dr. Ros Vallings, NCNED Centre Opening Ceremony]

    A question to ask Dr. Unger on her upcoming Feb 25, 2014 conference call is: "Which biomarkers & when?"

    I hope Dr. Unger was taking notes during this Ceremony when Sharni Hardcastle(Gold Coast AUS) described researchers making home visits to collect blood samples from severely ill patients. It was reported: "Follow-up with both moderately and severely ill patients showed that NK activity in the severe remained significantly far worse…She [Hardcastle] stresses the importance of looking at severity both clinically and in the laboratory."

    Speaking of biomarkers, anyone know the status of Dr. Tate's work on developing a diagnostic test?

    In other illnesses, the early research cohorts were the most severely afflicted. The thinking is that it would be easier to detect the markers of the illness in those with the worst illness. (Duh!) HIV, for example, was first detected in the most severely ill AIDS patients, not the HIV-positive people who were not yet severely ill.

    I'm not sure why so many people (I include the CDC as a whole in this group) insist on doing ME/CFS research with patients at the milder end of the illness — people who are still working and those who can easily get to testing locations.

    I'm 100% behind a clinical definition that (for the time being) is quite broad. We really don't know what the earliest symptoms of this illness are, and even the mild cases need treatment.

    What I'm NOT behind is a research definition that includes mild patients but not severe ones. That's likely to result in ambiguous research results at best, and completely incorrect ones at worst. We are already victims of this problem.

    If the CDC is focused only on getting a broad clinical perspective on the illness — one that doesn't miss anyone with the illness — then they could be headed in the right direction. Their grouping they're calling "CFS" may well include people who don't actually have the illness, but it won't leave out people who are early in the illness or have atypical presentations.

    Sharni Hardcastle's report mentioned by Gemini above exemplifies the importance of using severe patients in a research cohort. We cannot allow the CDC or anyone else to blur the line between a clinical cohort which can be broad and inclusive, and a research cohort which should be tight and limited. We critically need good research and that means a clear, unambiguous sample set.

  • biophile February 7, 2014, 2:38 am
    Unger

    We believe that the data collected in our study will help identify the best options for either measuring post-exertional malaise, or for identifying measures that correlate with this characteristic.

    The best options? Errr, what about the 2-day CPET test and the Lights' post-exercise mRNA test!!!

    The word "best" should not be tossed around lightly. Her statement should have read like this:

    Unger

    We believe that the data collected in our study will help identify the best mediocre options for either measuring post-exertional malaise, or for identifying measures that correlate with this characteristic.

  • Kati February 8, 2014, 2:40 am
    SOC

    In other illnesses, the early research cohorts were the most severely afflicted. The thinking is that it would be easier to detect the markers of the illness in those with the worst illness. (Duh!) HIV, for example, was first detected in the most severely ill AIDS patients, not the HIV-positive people who were not yet severely ill.

    I'm not sure why so many people (I include the CDC as a whole in this group) insist on doing ME/CFS research with patients at the milder end of the illness — people who are still working and those who can easily get to testing locations.

    I'm 100% behind a clinical definition that (for the time being) is quite broad. We really don't know what the earliest symptoms of this illness are, and even the mild cases need treatment.

    What I'm NOT behind is a research definition that includes mild patients but not severe ones. That's likely to result in ambiguous research results at best, and completely incorrect ones at worst. We are already victims of this problem.

    If the CDC is focused only on getting a broad clinical perspective on the illness — one that doesn't miss anyone with the illness — then they could be headed in the right direction. Their grouping they're calling "CFS" may well include people who don't actually have the illness, but it won't leave out people who are early in the illness or have atypical presentations.

    Sharni Hardcastle's report mentioned by Gemini above exemplifies the importance of using severe patients in a research cohort. We cannot allow the CDC or anyone else to blur the line between a clinical cohort which can be broad and inclusive, and a research cohort which should be tight and limited. We critically need good research and that means a clear, unambiguous sample set.

    @SOC I agree with you to a certain degree. It makes sense.

    From my point of view, the physicians that see ME patients see the ones who can make it to their offices. And often time, these patients, like me travel thousands of miles to see them. Of course the cohort will include only patients who can afford the testing since not very much is covered by insurance, for those who are insured. Moreover, the patients need to be able to complete the questionnaires. They're a lot of work.

    I believe that the physicians involved in the CDC study are doing their very best with what they get- and I believe that Dr Lapp is recruiting very severe patients for a study.

    I think the government will try to stall things for as long as they can. It's convenient and then patients are not very responsive due to the aspects of our illness.

    That said, I am one patient who belongs in the CDC cohort- for better or for worse. I was supposed to have an exercise test either in the fall or in February and this is not materializing as of yet. Why, I don't know but suspect that patients who have made noise demanding a 2 days CPET would be a reasonable explanation.

    If I am being summoned for a 1 day test it was in my intention to request to make it a 2 day test and pay the difference- as this would provide further proof of disability.

  • aimossy February 8, 2014, 3:35 am

    @Gemini Hi, we are hopefully to be updated in march…I will make sure updates go on the thread when we get them.:)

  • Firestormm February 8, 2014, 3:45 am

    @Kati

    That said, I am one patient who belongs in the CDC cohort- for better or for worse. I was supposed to have an exercise test either in the fall or in February and this is not materializing as of yet. Why, I don't know but suspect that patients who have made noise demanding a 2 days CPET would be a reasonable explanation.

    Are you suggesting that protest about not using the 2-Day test is actually delaying a major research initiative? Or perhaps I have misunderstood your meaning here. Might be worth you checking with CDC to see they haven't forgotten about you. Thanks for taking part. It must be very costly but hopefully worthwhile in the long run :)

  • Kati February 8, 2014, 4:24 am
    Firestormm

    @Kati

    Are you suggesting that protest about not using the 2-Day test is actually delaying a major research initiative? Or perhaps I have misunderstood your meaning here. Might be worth you checking with CDC to see they haven't forgotten about you. Thanks for taking part. It must be very costly but hopefully worthwhile in the long run :)

    i am not suggesting anything, I'm just saying that the exercise test was supposed to be either November or February and right now there is no clear plan. i don't know why. But I'm coming down anyways for a visit with the good doctors :-D.

  • Wally February 8, 2014, 5:24 am

    A couple of reasons that the testing can be delayed would be as follows: 1) recruitment of test subjects not yet complete, 2) testing guidelines not finalized and/or 3) funding not yet received.

    May be worth asking if any or the items identified above could be delaying the start of testing. I would think item no. 1 would be something each site would be tasked to do, but the CDC might be privy to where the recruitment process currently stands. Item No. 2 would be a question for CDC – who has designed the testing criteria and is this complete? Item No. 3 would again be something to ask the CDC because the funding would come out of their/HHS budget.

  • Bob February 8, 2014, 5:32 am

    The delay might simply be a case of refining the methodology and finalising the logistics.

  • Kati February 8, 2014, 5:53 am

    They need to make it clear, what are they testing for, what are they looking for and could they not collect bloodafter in order to confirm post exertional biomarkers. They are better getting it right because we all know what exercise costs the patients.

  • Ember February 8, 2014, 10:45 pm
    Gemini

    Agree. Would like Dr. Unger to build on the existing science & incorporate biomarker candidates in her study…. Perhaps a group here on PR could compile a biomarker list to suggest to Dr. Unger?

    Are you aware of how forcefully Dr. Under has been urged already, both during CFSAC meetings and in letters (here and here), to build on the existing science and incorporate credible biomarker candidates into her study? The empress has no clothes—as her flimsy veil of excuses shows.

    Even when publicly exposed, Dr. Unger doesn't commit to redressing her failures to act. She was asked at the IOM meeting whether she has been able to do an analysis of the different case definitions yet on her data set, and she replied:

    We have not done that. But it's certainly possible. The data is there. That requires a lot of interpretation that we feel will require a lot of dialogue with people. In other words, how to set the criteria for each of the various points of the disease criteria. So in other words, there's not a cut point for any of these.

    Dr. Klimas followed up by pointing out that the DSQ was included among the study's questionnaires and that “Lenny Jason has an algorithm on an Excel Spreadsheet that we could use to at least look at it in that way, just to compare Fukuda with 2003 Canadian.” But Dr. Unger continued to prevaricate: “Yes, but, but, yeah, um, it's, it's still, I think, requires some interpretation and discussion. But yes, the data is there.”

    Dr. Ungers' evasions suggest to me an intellectual dishonesty, the consequences of which should be considered a crime. How long does she get to play out her slow progressive reveal before being properly called to account?

  • Ember February 8, 2014, 10:54 pm
    SOC

    I'm 100% behind a clinical definition that (for the time being) is quite broad. We really don't know what the earliest symptoms of this illness are, and even the mild cases need treatment…. We cannot allow the CDC or anyone else to blur the line between a clinical cohort which can be broad and inclusive, and a research cohort which should be tight and limited.

    You're 100% behind a broad clinical definition for which illness? If ME were to be included in a broad CFS clinical definition, would exercise be prescribed or not?

    The ICC allows for early diagnosis without any six-month wait period.

    Disease definitions can be relaxed or tightened depending on whether they're used clinically or in research. Are you opposed to the ICC because of its being both a clinical and a research definition?

  • alex3619 February 9, 2014, 12:07 am

    In any case the CDC is working toward a new research definition, if my understanding is correct. That will need to be a stronger definition than a clinical one.

  • Ember February 9, 2014, 1:36 am
    alex3619

    In any case the CDC is working toward a new research definition, if my understanding is correct.

    Dr. Unger writes, "The data collected in this study will be useful in evaluating current and proposed diagnostic criteria, but creating new CFS case definition criteria is not a goal…. A new definition of CFS is not the objective of this study."

  • Bob February 10, 2014, 8:12 am

    Re the 48 hour post-exertional cognitive tests, the results may depend on the type of test used.
    If my memory serves me correctly, some some studies have shown cognitive deficits in ME patients only (or mainly) in processing speed during complex tasks.
    So if such a test is not included in the CDC study, then the cognitive test results might not have helpful results.

  • justinreilly February 24, 2014, 7:44 am
    heapsreal

    hopefully if these private guys come up with something then they might get more govt research dollars. The aussie researchers Peterson is working with at griffith uni are getting reasonable govt grants here, its not in the cancer range $$ but its more then they have done in the past. When issues start arising and being replicated then the govt are going to have to act.

    Can't speak for Aussies, but the US govt is not 'going to have to act', they will just continue their charade they have been doing from day one. Look at Lyme- they (we- I have Lyme) have had the pathogen isolated for years and yet CDC and insurance backed med professors at Yale/IDSA still get away with point blank lying and screwing with the science and patients just like they do with us. Doctors even get their licenses revoked for treating with long-term antibiotics.

    That doesn't mean we should lose heart, it just means don't expect that things will change overnight and CDC will fall in line if some biomarkers are replicated again. They are fighting a war against us and the science. They are just shifting their tactics slightly. Keep fighting back. Especially we need to keep going to their bosses- Congress and the President or we will get nowhere.

  • justinreilly February 24, 2014, 8:00 am
    JKN

    I feel like a stranger in a strange land with all of this talk about the CPET test. I took a cardiac stress test 9 years ago which cause very severe disease progression and heart damage. I am now in diastolic heart failure as a result of this stress test. I also lost my ability to talk.

    "Findings which suggest mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy in CFS patients led CFS expert Professor Paul Cheney to comment. ‘The most important thing about exercise is not to have patients do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’ Numerous heart, lung, brain and other abnormalities also show strong evidence that exercise can have extremely harmful effects on CFS patients in many different bodily systems, permanent damage may be caused, as well as disease progression." (Williams 2004, [online]).

    "Not only is it inappropriate for CFS patients to undergo a treadmill stress test or be pushed toward age-predicted target heart rates, but this is potentially dangerous." Philipa Corning, Ph D, Vice President Quest 61, 2003

    Dr. Paul Cheney wrote (http://www.cheneyresearch.com), "We have a rising case load of diastolic dysfunction seen in 97% of our CFS cases (avg. age 49) and some appear to have what I would call compensated diastolic heart failure. I would define compensated DHF in CFS as an extremely low cardiac output with a cardiac index (CI) below 2.0 and very poor functional capacity combined with the inability to stand which is the corollary in DHF to the inability to lay down flat in systolic heart failure (SHF). Heart failure patients are typically below 2.0 in CI. I have several CFS patients below that number and they cannot stand still for more than 15-30 seconds without having to sit down or fall down. Walking or moving helps which makes sense as that would increase filling pressures and equivalent to laying down. They might be diagnosed as having orthostatic intolerance by others."

    "Recently, Jason et al (2006) reported that the mean age of patients with myalgic encephalomyelitis/chronic fatigue syndrome dying from heart failure, i.e. 58.7 years, is significantly lower than the age of those dying from heart failure in the general US population, i.e. 83.1 years."

    So I am totally shocked by these exercise tests going on. Unless, I have a different disease, which I don't believe I do, or that there is a difference between ME and CFS, then I don't understand why PWCs taking this cardio test aren't having the same horrific results that I've had. If these tests expand in this study, and PWCs aren't warned of the possible results of severe permanent disease progression, then I fear what might happen to some patients.

    Furthermore, I don't understand why there are no research studies going on today reg. the effects that ME/CFS has on the heart, i.e. this is one of the main causes of death from ME/CFS.

    When I look at the current research most of it seem irrelevent to me. None of it is going to save my life.

    So I just wanted to put out this warning for PWCs taking these cardio stress tests, because there seems to be no serious warning out there. I don't think most ME/CFS doctors understand the possible consequences.

    I think these are very good points!

  • Bob February 24, 2014, 11:33 am

    Does anyone have any information on the genomic study that the CDC is supposed to be doing?
    Either I've not seen any details about it, or I've forgotten.

  • Bob February 25, 2014, 4:21 pm

    Reminder that this conference call takes place today.

    There's a separate thread about it here:
    http://forums.phoenixrising.me/index.php?threads/february-25th-pcoca-call-with-cdc.27803/

    MARK YOUR CALENDARS:

    CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call

    Tuesday, February 25, 2014

    3:00 pm * 4:00 pm EST

    Call number: 1-800-369-3365
    Participant Code: 1471493

    Meeting Agenda

    3:00pm Welcome and Telephone Overview

    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention​

    3:15pm "CFS and Cognitive Function"

    Gudrun Lange, Ph.D.
    Consultant Clinical Neuropsychologist
    Pain and Fatigue Study Center
    Beth Israel Medical Center, NY, NY
    Professor, Department of Physical Medicine and Rehabilitation Rutgers University​

    3:45pm Questions from CFSPCOCACall Mailbox for Guest Speaker and CDC

    Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.

    Please note that questions for the Guest Speakers and CDC can be submitted only via email at:
    CFSPCOCACall@cdc.gov
    This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls.

    If you would like to be added to the call list, please send an email to: CFSPCOCACall@cdc.gov

    Contact for CFS PCOCA Conference Call: CFSPCOCACall@cdc.gov
    The CFSAC Support Team cannot answer questions about this upcoming call.

  • Ritto February 25, 2014, 4:40 pm

    I was recently able to listen to a conference call, from the UK, on Skype, from which there was no charge.

  • Bob February 25, 2014, 10:20 pm

    I just listened to the CDC's 25th Feb telephone conference call.

    Beth Unger said that the exercise study will begin soon.

    They are awaiting approval from a research ethics committee, and expect to get approval soon.

    On a separate note, stage 3 of the CDC's project will include both homebound and newly diagnosed patients.

  • Bob February 25, 2014, 10:28 pm

    Beth Unger has said that the cognitive tests for the CDC multi-site study have been planned in consultation with Dr Gudrun Lange*.

    Dr Gudrun Lange gave a talk on the CDC's 25th Feb telephone conference call.

    I was very impressed by her talk, and so I hope her knowledge is reflected in the cognitive tests that the CDC use.

    Lange mentioned that, in cognitive tests, ME/CFS patients are accurate but slower.
    And she said that complex tasks show most difference from controls:
    ME/CFS patients have difficulty with complex information processing and multi-tasking.

    In a swipe at those who dismiss ME/CFS patients' cognitive problems, Lange said that ME/CFS patients do not amplify their cognitive problems (i.e. they do not invent them), but they have cognitive problems that may not be picked up by simple tests that do not test complex cognitive functioning.

    This is exactly how I understand the nature of ME patients' cognitive function, from research studies that I've read.
    i.e. for simple tasks our tests results can be normal, but differences show up on complex processing tasks, specifically processing speed during complex tasks.

    * Gudrun Lange, Ph.D.
    – Consultant Clinical Neuropsychologist, Pain and Fatigue Study Center, Beth Israel Medical Center, NY, NY.
    – Professor, Department of Physical Medicine and Rehabilitation Rutgers University.

  • Firestormm February 25, 2014, 11:03 pm

    @Simon See above – you mentioned cognition earlier on the dog-and-bone.

  • Mark February 26, 2014, 2:17 am
    Bob

    Beth Unger has said that the cognitive tests for the CDC multi-site study have been planned in consultation with Dr Gudrun Lange*.

    Gudrun Lange gave a talk on the CDC's 25th Feb telephone conference call.

    I was very impressed by her talk, and so I hope her knowledge is reflected in the cognitive tests that the CDC use.

    Lange mentioned that, in cognitive tests, ME/CFS patients are accurate but slower.
    And she said that complex tasks show most difference from controls:
    ME/CFS patients have difficulty with complex information processing and multi-tasking.
    In an attack on those who dismiss ME/CFS patients' cognitive problems, Lange said that ME/CFS patients do not amplify their cognitive problems (i.e. they do not invent them), but they have cognitive problems that may not be picked up by simple tests that do not test complex cognitive functioning.

    This is exactly how I understand the nature of ME patients' cognitive function, from research studies that I've read.
    i.e. for simple tasks our tests results can be normal, but differences show up on complex processing tasks, specifically processing speed during complex tasks.

    * Gudrun Lange, Ph.D.
    Consultant Clinical Neuropsychologist, Pain and Fatigue Study Center, Beth Israel Medical Center, NY, NY.
    Professor, Department of Physical Medicine and Rehabilitation Rutgers University.

    Simon wrote a great article about the evidence on cognitive function in ME/CFS last year:
    http://phoenixrising.me/archives/16688

  • Simon February 27, 2014, 11:40 am
    Bob

    Beth Unger has said that the cognitive tests for the CDC multi-site study have been planned in consultation with Dr Gudrun Lange*.

    Dr Gudrun Lange gave a talk on the CDC's 25th Feb telephone conference call.

    I was very impressed by her talk, and so I hope her knowledge is reflected in the cognitive tests that the CDC use.

    Lange mentioned that, in cognitive tests, ME/CFS patients are accurate but slower.
    And she said that complex tasks show most difference from controls:
    ME/CFS patients have difficulty with complex information processing and multi-tasking.

    In a swipe at those who dismiss ME/CFS patients' cognitive problems, Lange said that ME/CFS patients do not amplify their cognitive problems (i.e. they do not invent them), but they have cognitive problems that may not be picked up by simple tests that do not test complex cognitive functioning.

    This is exactly how I understand the nature of ME patients' cognitive function, from research studies that I've read.
    i.e. for simple tasks our tests results can be normal, but differences show up on complex processing tasks, specifically processing speed during complex tasks.

    * Gudrun Lange, Ph.D.
    Consultant Clinical Neuropsychologist, Pain and Fatigue Study Center, Beth Israel Medical Center, NY, NY.
    Professor, Department of Physical Medicine and Rehabilitation Rutgers University.

    Dont suppose anyone has a recording of this call? I was late, and it wouldn't let me in!

  • Bob February 27, 2014, 11:56 am
    Simon

    Dont suppose anyone has a recording of this call? I was late, and it wouldn't let me in!

    Yes, there's a recording here:
    http://forums.phoenixrising.me/inde…-pcoca-call-with-cdc.27803/page-2#post-434408

  • shahida March 28, 2014, 9:13 pm

    hi I've some questions:
    *will Dr Lipkin do actual stomach muscle biopsies for this study?
    *which criteria does it use to determine 'me/cfs' patients?
    *it looks increasingly like the me community will have to self fund such studies but is there a more effective way of finding out about them as opposed to ill people having to go onto this site? There's nothing wrong with that in principle but many people just can't and no one I know with ME knows about this as they're too ill too actually expend scant energy as look stuff up. eg. is there a emailing system where the latest research appeals come to you? Maybe emails to all the a few people in the local support groups across the world who may be able to tell others in the group eg. via newsletters and email. It could be given a name like 'local support group information (or something better what with brain fog) . I've only found out about this by looking this up and I can't (or shouldn't) do that so often .. This way we'd maximise the money raised.
    thanks for any info' out there

  • Bob March 28, 2014, 9:26 pm
    shahida

    hi I've some questions:
    *will Dr Lipkin do actual stomach muscle biopsies for this study?
    *which criteria does it use to determine 'me/cfs' patients?
    *it looks increasingly like the me community will have to self fund such studies but is there a more effective way of finding out about them as opposed to ill people having to go onto this site? There's nothing wrong with that in principle but many people just can't and no one I know with ME knows about this as they're too ill too actually expend scant energy as look stuff up. eg. is there a emailing system where the latest research appeals come to you? Maybe emails to all the a few people in the local support groups across the world who may be able to tell others in the group eg. via newsletters and email. It could be given a name like 'local support group information (or something better what with brain fog) . I've only found out about this by looking this up and I can't (or shouldn't) do that so often .. This way we'd maximise the money raised.
    thanks for any info' out there

    Hi shahida, and a very big welcome to the forum. :)

    You've posted your message on a thread about the CDC's program, but you seem to be asking about Dr Lipkin's research.

    If you're responding to a recent article about Dr Lipkin's proposed microbiome study, it would be best to post a comment on that thread.

    If you'd like me to copy your questions over to the appropriate thread, then please let me know.

    This is the recent article about Dr Ian Lipkin and the fundraising project:
    http://forums.phoenixrising.me/inde…robiome-crowdfunding-campaign-launches.29252/

  • shahida April 5, 2014, 8:02 pm
    Bob

    Hi shahida, and a very big welcome to the forum. :)

    You've posted your message on a thread about the CDC's program, but you seem to be asking about Dr Lipkin's research.

    If you're responding to a recent article about Dr Lipkin's proposed microbiome study, it would be best to post a comment on that thread.

    If you'd like me to copy your questions over to the appropriate thread, then please let me know.

    This is the recent article about Dr Ian Lipkin and the fundraising project:
    http://forums.phoenixrising.me/inde…robiome-crowdfunding-campaign-launches.29252/

    yes thanks Bob it would be great if you could do that. My brain really can't handle computers well-sites are so 'busy'. my apologies but I'm sure you understand….

  • Bob November 9, 2014, 12:50 am

    Simmaron Research has published a new blog on its website by Cort Johnson about the CDC's multi-site study. I don't think there's any new information in it.

    Going Grassroots: Dr. Unger on the CDC’s Chronic Fatigue Syndrome Multisite Studies
    Cort Johnson
    November 8, 2014

    http://simmaronresearch.com/2014/11…s-chronic-fatigue-syndrome-multisite-studies/

    (If anyone wants to start a new thread about it then please do.)

  • Hate ME/CFS November 10, 2014, 12:44 am

    Dr Beth Unger refuses to remove the CDC's outdated "toolkit", and she has refused to recognize the CCC definition of CFIDS. Maybe if they did one of these two things, the CDC could be taken seriously.