• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The third (second open) IOM meeting May 5th

B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Nielk said:
Regarding the speaker Megan Arrol of the UK, Tate Mitchell posted the following on co-cure:
Click to expand...

:rolleyes:

So how do we register our objection to the inclusion of this speaker, and point out that Megan Arrol will not be discussing ME/CFS (G93.3), but will be discussing a different illness (some sort of psychological disorder)?

Is there any way to register an objection to the process?
 
Nielk

Nielk

Senior Member
Messages
6,970
A case study by Megan arroll: http://www.racgp.org.au/afp/2013/april/chronic-fatigue-syndrome/

She is advocating GET and CBT for the 'managemnt' of a CFS/ME diagnosis

Excerpts:

Negotiating the diagnosis
Following the examination, it is reconfirmed that the patient meets the criteria for CFS. At this point it would be beneficial to explain to her that this is a diagnosis of exclusion and explore her own understanding of the diagnosis. Communicating to the patient that CFS is an incompletely understood condition with no single clear biomedical cause, and that there is now evidence to suggest that a triggering event (such as a viral infection3 or traumatic life experience4) may lead to this chronic condition,5 can be helpful for acceptance of the diagnosis. It is essential not to deny her symptoms and to avoid giving the impression that negative results indicate that there is ‘nothing wrong’6 as this can lead to feelings of ‘delegitimation’.7 It is worth stating to her that there is no agreement on the cause of CFS but there is a lot of research interest in the topic.
Click to expand...

Suggested treatment program
Considering the patient’s narrative and experiences, pragmatic rehabilitation may be the best treatment program for her.13,14This type of treatment has been shown to be effective in short-term randomised control trials conducted in primary care, using a model of a nurse delivered program of graded return to activities, designed collaboratively by the nurse and the patient.13 In this study, sleep patterns were regularised and relaxation exercises offered to address the somatic symptoms of anxiety. Supportive listening as a therapeutic strategy was not shown to be effective, suggesting that keeping the focus on activities (and the future) may be more important once an empathic relationship has been established. Social support is also important in this condition,15 particularly for coping with negative interactions with family and friends.15 It could be suggested that the patient discuss the stigma that she’s experienced and how to manage interactions with loved ones. A discussion about liaising with her employer or occupational health services at work may also be beneficial, given the stress felt about days taken off. Given her condition is mild and not yet adversely effecting her work situation, it is reasonable to monitor her progress in general practice. With a new clinical team she may improve sufficiently to not warrant referral. The British National Institute for Health and Clinical Excellence recommends referral after 6 months for mild cases1 and a decision about referral would need to be made jointly with the patient.
Click to expand...
 
Nielk

Nielk

Senior Member
Messages
6,970
Bob said:
:rolleyes:

So how do we register our objection to the inclusion of this speaker, and point out that Megan Arrol will not be discussing ME/CFS (G93.3), but will be discussing a different illness (some sort of psychological disorder)?

Is there any way to register an objection to the process?
Click to expand...

@Bob -

Please use the email mecfsopensession@nas.edu to submit your written comments. Written comments received by April 23, 2014, will be distributed to the committee before the meeting on May 5. After April 23, written comments should be sent to the project email address (mecfs@nas.edu). All comments will be considered by the committee, but those received after the April 23 deadline may be distributed after the meeting is adjourned. As with any information sent to inform the committee, all written comments will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act.
Click to expand...

Until April 23rd we can submit comment (I guess objections too?) at: mecfsopensession@nas.edu
 
Nielk

Nielk

Senior Member
Messages
6,970
What do you think of this?

To the IOM ME/CFS committee:

We, the undersigned, hereby formally object to the choice of Megan Arroll as a key speaker at the next IOM meeting on May 5th.

As patients suffering from ME/CFS, we have previously voiced our opinion through comments to the IOM and through presentations at the January meeting. We have all as ‘one voice’, expressed to you that ME/CFS is a serious organic disease. It is not a somatoform illness with psychological undertones.

We are therefore seriously worried and feel that we have not been ‘heard’, as the IOM has chosen this speaker who is a proponent of the psychological slant of this disease, to present at the next meeting. Furthermore, this speaker promotes GET and CBT as a treatment as evidenced by this case study she wrote. We have previously shown overwhelming evidence that GET and CBT are harmful to ME/CFS patients.


A quick look at Megan Arrol’s website “The Optimum Health Clinic”, will reveal that Megan Arrol’s true concept of this serious and debilitating disease, is a somatoform one. Her book “Secrets to Recovery”, includes chapters titled: “Open Your Mind to New Ideas”, “Release Your Fears”, and “Finding Your Purpose”. Is this the education that IOM feels the committee members need to hear?

We, the undersigned, therefore ask you to replace this speaker with one that is knowledgeable in the organic neurologicals aspects of the disease that we all suffer from.

Very truly yours,
Click to expand...

Once we finalize the letter, I will post it on a public google.doc and then people can just add their names to it.
 
Last edited:
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@Nielk I don't believe she works at Optimum anymore. I'm trying to find out what her situation is and what she might be speaking about at the meeting. I almost met her last year at a meeting I attended, but wasn't introduced, so can't really add anything from my experience. I will let you know what I discover - if anything at all. Not that it changes what she has published of course: just might help you to be more aware.
 
NK17

NK17

Senior Member
Messages
592
Nielk said:
Please give me feedback/edits for this letter.
Click to expand...
@Nielk I would suggest to change the word disturbed with seriously worried.

Maybe also mention at the end that we don't need "life coaching lessons", what we need is biomedical research such as the one that is currently undertaken @ Stanford by Prof./Dr. Montoya's group as well as the one into genetics done by Prof. Ronald W Davis (also @ Stanford and a respected member of the American Academy of Sciences) with Dr. Andreas Kogelnik.

Prof. Davis' son is severely affected by ME and if I have to bet on any of the few real experts/scientists on the panel, I bet on Prof. Davis to defend and bring the truth about our very organic, debilitating, chronic disease.
 
Last edited:
Nielk

Nielk

Senior Member
Messages
6,970
NK17 said:
@Nielk I would suggest to change the word disturbed with seriously worried.

Maybe also mention at the end that we don't need "life coaching lessons", what we need is biomedical research such as the one that is currently undertaken @ Stanford by Prof./Dr. Montoya's group as well as the one into genetics done by Prof. Ronald W Davis (also @ Stanford and a respected member of the American Academy of Sciences) with Dr. Andreas Kogelnik.

Prof. Davis' son is severely affected by ME and if I have to bet on any of the few real experts/scientists on the panel, I bet on Prof. Davis to defend and bring the truth about our very organic, debilitating, chronic disease.
Click to expand...

Thank you @NK17 for your feedback. I did change 'disturbed' to 'seriously worried'.

As far as stating that what we need is biomedical research, although very true, does not fit in with the topic which is:
"Neurocognitive impairments in ME/CFS ".
 
NK17

NK17

Senior Member
Messages
592
Maybe we should instruct, or shall we say educate, the IOM panel about where and how and by whom real biomedical and scientific research is done in the world on the many aspects of ME/CFS (starting with our doctors here in the US).

It would be a MEMO to open up their eyes to what should be considered at the end of their process.

In the end we can let them listen to all the shenanigans in the world, what counts is only real SCIENCE, the one that so far has basically almost never been funded.
 
L

liquid sky

Senior Member
Messages
371
It appears that they are going to control the information presented, so the conclusions will be led towards ME being a somatoform disorder. Control the information presented and this controls the conclusions that are reached. There is little chance that what we want presented will be. If we participate, they will say we were in agreement. If we don't, they will say we didn't care to participate.

I can see why some are on the fence about this as it seems to be heads they win and tails we lose.
 
Last edited:
NK17

NK17

Senior Member
Messages
592
liquid sky said:
It appears that they are going to control the information presented, so the conclusions will be led towards ME being a somatoform disorder. Control the information presented and this controls the conclusions that are reached. There is little chance that what we want presented will be. If we participate, they will say we were in agreement. If we don't, they will say we didn't care to participate.

I can see why some are on the fence about this as it seems to be heads they and tails we lose.
Click to expand...
I hear this point of view @liquid sky and it's a valid argument ...

We're stuck in a conundrum and basically some say that whatever we say will be used against us.

My first reaction was one of total refusal of the IOM panel, but now I'm reconsidering it.
 
A.B.

A.B.

Senior Member
Messages
3,780
Nielk said:
Please give me feedback/edits for this letter.
Click to expand...

It is necessary to cite studies or authoritative sources in support of the assertion that "ME/CFS is a serious organic disease". The letter kind of flows from that.

Here is my attempt, drawing inspiration from Nielk's version. Please feel free to point out any problems, as I'm not a native English speaker.

If you have better sources to add, please say so. Facts are good.

To the IOM ME/CFS committee:

We, the undersigned, hereby formally object to the choice of Megan Arroll as a key speaker at the next IOM meeting on May 5th.

Biomedical research has shown that ME/CFS involves dysregulation of the immune system and central nervous system, dysfunction of cellular energy metabolism, and cardiovascular abnormalities (see the ME International Consensus Criteria for a selection of studies). In particular, cardiopulmonary exercise testing (CPET) according to the Stevens protocol provides objective evidence for the presence of serious underlying pathology. CPET is normally used to detect conditions such as heart failure, lung diseases, and metabolic muscle diseases.

A quick look at Megan Arrol’s website “The Optimum Health Clinic”, will reveal that Megan Arrol views ME/CFS as somatoform disorder. Her book “Secrets to Recovery”, includes chapters titled: “Open Your Mind to New Ideas”, “Release Your Fears”, and “Finding Your Purpose”. Furthermore, this speaker promotes GET and CBT as a treatment as evidenced by this case study she wrote. Psychotherapy has not been shown to be capable of curing serious biological pathology.

As patients suffering from ME/CFS, we believe that Megan Arrol's point of view is unhelpful and not relevant to our condition. We therefore ask you to replace this speaker with one that is familiar with the biological abnormalities found in ME/CFS.

Very truly yours,
Click to expand...

Edit: also linking the cited sources for instant access would be helpful.
 
Nielk

Nielk

Senior Member
Messages
6,970
Firestormm said:
@Nielk I don't believe she works at Optimum anymore. I'm trying to find out what her situation is and what she might be speaking about at the meeting. I almost met her last year at a meeting I attended, but wasn't introduced, so can't really add anything from my experience. I will let you know what I discover - if anything at all. Not that it changes what she has published of course: just might help you to be more aware.
Click to expand...

On the agenda of the IOM meeting, they present her as:
Megan Arroll, Director of Research for The Optimum Health Clinic, London, UK
 
You must log in or register to reply here.