International: IACFS/ME - International Association for CFS/ME, IACFSME

I wonder if Phil Parker will be attending or giving a presentation, to further promote his latest 'research' which was published in IAFME's journal - CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric [CFS], 2021, Anderson et al

 

To be fair, pacing I think is behavior and it would be good to see it [edit] more rigorously studied as a means of coping.

However, Fred Friedberg gives a workshop together with Leonard Jason on:

"Behavioral Assessment and Treatment of ME/CFS and Fibromyalgia"

https://www.iacfsme.org/2021-iacfsme-virtual-conference/

 

1. Conference - yes, even virtual ones - are expensive to organize and operate, even as we negotiate for the lowest rates possible, rely on a unpaid volunteers (including all of the Board and a few dedicated people), and go for bare amenities. Major costs include technical help, software, administrative help (beyond the capabilities of volunteers), and continuing medical education credits.

Our conference is different from most other ME/CFS conferences because:

a. Generally, we do not pre-assemble a list of speakers/ topics. We also prioritize new, UNPUBLISHED, original research from anyone that meets appropriate scientific standards (i.e. appropriate design, statistical analysis, etc.). Thus, the process of gathering abstracts, reviewing them via a volunteer scientific Committee, processing them, and then re-contacting people who submit to prepare posters/ talks takes time, money, and effort.

b. Continuing medical education credits are provided. That is more likely to attract clinicians than a meeting with no CME. Doctors, nurses, therapists, etc. are required to complete a certain number of CME to maintain their licenses. CME means a 3rd party - in this case, Stony Brook University School of Medicine - has to go through all materials and accredit them. Even so, our CME credits are only $25-30/ hour, lower than the $40-70/ hour that is the norm for the US. Our fees are lower than most similar conferences in the US. One of IACFS/ME's goals is to educate health professionals.

c. There are 30+ speakers along with 50+ poster presentations over 3 days. Speakers are from all over the US and world. (See the schedule.) You can also view our 2016 program to get an idea of speakers/ posters. As far as I know, this is larger and longer than most ME/CFS conferences.

2. Sponsorship only covers organization fees above partially. We are grateful to our sponsors and every dollar that is donated. However, sponsorships don't cover everything. If anyone would like to volunteer to help us fundraise, you can contact us via this page.

3. For people who cannot afford the conference, every year, we invite a few journalists/ writers to report on the meeting. They are asked to publish reports that can be freely accessed. For example, these are the 2020 Summaries.

Registering for the conference covers live attendance and 1 month's online access to a recording of the meeting.

The conference is aimed primarily at scientists and healthcare professionals. However, because there has been and continues to be a lack of education/ research on ME/CFS, for the last 3 decades, patients and their supporters have been invited to every conference. The Patient/ Public day is designed specifically for a lay audience although many patients/ supporters also appreciate attending the more technical presentations/ poster sessions.

 

1. The journal is titled the way it is in order to survive financially as a journal and attract a wide range of submissions/ readers. IACFS/ME doesn't make much from the journal but the publishers Taylor and Francis still have to be paid to provide services such as editing, supporting an online platform, etc. Relative to other fields, the number of professionals engaged in ME/CFS research, interested in subscribing to such a journal, etc. would not be enough to sustain a journal. Opening up the journal to a wide range of submitters and readers also means 1) ME/CFS researchers/ health professionals can learn from other fields and b) People in other fields can learn about ME/CFS.

Additionally, for many years, IACFS/ME was one of the few avenues for researchers to get an article about ME/CFS published in a peer-reviewed journal/ publication. Thankfully, there is less prejudice in the last 5 years from other journals but it is still present.

2. Beyond the title, look into the great majority of what is actually submitted and published in the journal and by IACFS/ME. For example, most people likely don't know the first formal paper questioning PACE - written by Carolyn Wilson and Tom Kindlon - "Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial" was published by IACFS/ME in 2016, before all the other journals. Before that, Tom Kindlon's 2011 paper about the harms of GET/ CBT was published in the IACFS/ME Bulletin.

You can see what has been published via the journal's homepage.

This may also be somewhat esoteric to the public but there is also a division between an organization and the journal it sponsors. This is true of most journals and organizations, not just IACFS/ME. Publication of an article does not equate to official endorsement of an article by the organization or its Board. The nature of publishing is to encourage discussion, including positions/ topics the organization may not agree with. This is like a newspaper where what is published (the news) is separate from its editorial pages, where the owners of the paper and the editors express their organization's/ personal opinions.



3. IACFS/ME has long opposed using behavioral techniques as the main treatment for ME/CFS. For example, see this 2009 article by Dr. Lucinda Bateman (under Resources on our webpage) and our 2014 Primer. In fact, practically all healthcare professionals and scientists in the US (and many worldwide) involved in ME/CFS are or have been members of IACFS/ME. Most have spoken, presented at our conferences or published in the Fatigue journals. Some like Dr. Nancy Klimas and Dr. Lucinda Bateman have even been President or sat on our Board.

4. Look beyond people's specialties and titles to the work they actually produced. It is prejudicial to do so otherwise. Albeit not for IACFS/ME, Dr. Friedberg published this editorial about "Re-thinking the Standard of Care" in 2019 for the Journal of General Internal Medicine and anyone who doubts Dr. Jason's work need only look at the many talks he's presented and the articles he has published.

Psychiatrist, psychologists, and other mental health professionals have a key role to play in this field. Because of their expertise, they can help show why this is NOT a psychological/ psychiatric condition. Some may recall the special issue of the Journal of Health Psychology - yes a journal produced by psychologists - devoted to discussing the pitfalls of PACE.

 

No doubt that Fatigue is an important journal for ME research that publishes many highly valuable papers.

Also, I appreciate that the journal is a means of exchange and discussion for all kind of topics and people involved with research on ME in general as well as on fatigue in ME and other illness.

The Lightning Process paper however is not published as an opinion piece but as research. As such, it's just not acceptable -- see https://www.s4me.info/threads/cbt-r...for-paediatric-cfs-2021-anderson-et-al.21335/

edit: cross-posted with Hutan

edit 2: Of course, if it were an opinion piece it still should not misrepresent results nor present hypotheses as facts.

 

Seems like a direct claim of ownership and control to me.

"Since 2013, in partnership with Taylor and Francis, IACFS/ME has published a quarterly, peer-reviewed medical journal. "

https://www.iacfsme.org/journal/

 

Since the main issue seems to circulate around the Parker paper and the journal is more than Dr. Friedberg, here are two things you can do:

1) Write a Letter to the Editor. This is the usual route for concerns about any scientific article. Your Letter may be published and shared with the authors of the paper who can respond. Here is some general information about Letters to Editors.

2) Contact the journal's Editor and the Editorial Board directly. They - more than the IACFS/ME Board - control the daily/ regular operations of the journal. I'd also add that neither the Editor nor the Editorial Board are the sole judges of what is published nor how it is published. There are also peer reviewers whose thoughts/ opinions are also factored in. Because peer review is blinded, the names of reviewers are not published.

(On a personal note, I have been involved in the ME/CFS field for 15 years from many angles so am well aware of the Lightening Process and most issues in ME/CFS.)

 

This is a bit off topic, sorry about that, but since you mentioned your primer I'd like to take this opportunity to ask. I've found it immensely helpful over the years, thank you so much

Do you have any plans to publish an updated version of this primer? If not, why not?

Many thanks

 

Maybe there should be a letter from S4ME with 2000 members signatures.

A letter to the editor is not going to solve an me/cfs professional organisation running a journal with a poor editorial policy but it would be a start.

 

If i remember well last year it was about 50$ for students and patients

 

I think a letter from s4me with 2000 members signatures might be more on the nail. In a sense professionals querying editorial decisions is counter to the concept of peer review with editorial freedom. you go round in circles. But 2000 patients complaining about poor editorial policy might wake someone up.

 

I would be happy to to sign such a letter, though I struggle to collate information and ideas so don’t think I could currently draft or edit such a letter.

For me there are two main issues:

Firstly the issue of child protection, and that undertaking an intervention with children that instructs them to ignore their medical symptoms and to lie about those symptoms to others can never be ethical, so should not be supported by journals accepting any article or conferences accepting any paper that advocates the LP for children and/or does not make this issue clear.

Secondly, though I support academic freedom, I object to any publication of articles promoting the LP, not because it does not work and is based on speculative nonsense, but because the current commercial secrecy renders independent evaluation or independent replication of any research impossible. That the research so far was never going to give interpretable answers is less of a problem to me than the impossibility of independent replication.

In the case of the bad science I feel there might be a place for publication, as long as any publishing journal’s editorial policy insists any article makes clear that it is impossible to interpret the results of unblinded trials relying on subjective outcomes alone. Bad science is one thing, but the the LP commercial secrecy places it outside science altogether and so means it should have no place in any scientific journal.