The third (second open) IOM meeting May 5th

[Kati]

Being on the record, telling our experience is important in my opinion.

And for those that will say that it won't make a difference, then what are you suggesting?
Our voices is sometimes all that's left. Social media is the strength that we have.

 

[Undisclosed]

Being on the record, telling our experience is important in my opinion.

And for those that will say that it won't make a difference, then what are you suggesting?
Our voices is sometimes all that's left. Social media is the strength that we have.

I think telling our experience is important too but what they really need to see are videos of people who are too ill to be there. They aren't seeing ME as it should be seen. The IOM needs to hear from doctors who treat Me. They need to hear from those who were involved in the CCC and ICC.

What I would suggest that they treat ME like any other serious disease.

 

[Nielk]

– First - I am NOT holding my breath about the report IOM will produce. I have significant concerns about the process and what may come out of it. –


On a different IOM note - in more than one place I have seen criticisms of the patient/advocate panel at the May 5th IOM meeting for telling illness stories 'yet again when they've been told so many times before.'


But it is important to note that the IOM agenda listed the focus of the patient/advocate panel as

“Patient and Advocate Panel: Challenges of ME/CFS patients when interacting with the health care system” (http://www.iom.edu/~/media/Files/Activity Files/Disease/MECFS/Open Session Agenda_04 17 14.pdf )


Each of us has had (far too many awful) encounters with the healthcare system. If providing specific input about some of our experiences to the IOM committee can help break that cycle, I think that could help us all.


Additionally IOM provided the following questions to panel participants:

“Ø Please tell us about your (or your family member’s) experiences in seeking for care for ME/CFS.

- What symptoms brought you to your healthcare provider?

- What type of healthcare provider diagnosed you?

- How long did it take to get diagnosed?

- What types of obstacles did you encounter in getting a diagnosis?

- How have your symptoms changed over time?

Ø In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?”


So my presentation addressed

onset and what took us to the healthcare provider (symptoms)

baseline

cognitive impairment and post-exertional collapse (post-exertional malaise)

obstacles

symptoms 2014

healthcare providers NEED to know


I wove the thread of cognitive impairment and post-exertional collapse (aka PEM) through my presentation to demonstrate that I think that as a first step healthcare providers NEED to know that cognitive impairment is debilitating, frightening, and frustrating and that they NEED to know that post-exertional collapse is debilitating, pervasive and can be triggered by cognitive and/or physical exertion.


Yes. I n my presentation I told yet another patient story, yet another time. I did so while trying to answer their questions so that I know they have been given at least some accurate information (since I don't know what material they are reading as part of their literature review).

I'm sorry @Denise that you felt that these comments out there were insulting to you. You certainly do not deserve that. As I personally relayed to you, I felt proud of you and thought you did a real good job portraying the truth about this disease. I especially appreciated the fact that you kept pressing the importance of neurocognitive problems and the hallmark symptom of PEM or PEC (collapse). Those are two key issues to drive home.

Many would have preferred if we had all boycotted the meeting since they feel that there is no legitimacy to these proceedings and they do not want patients/advocates to take part in it.

I feel that since we did have representation, I am really glad that you took it upon yourself to attend despite the fact that it took such a large toll on your son and I'm sure yourself too. I hope that you all recover quickly.

My personal frustration was in the fact that this was a great opportunity to drive home the fact that we need a strict set of criteria - actually I would have told them to adopt the CCC for now as our experts have advocated.

The real problem is with the whole process and with the agenda that they have set for the meeting. I would have hoped like many others have stated that they would have asked some of our many experts who have had clinical experience treating thousands of patients to come and speak. I am dumbfounded that they did not feel the need to do that.

I also understand that you were restricted in answering and following their questions. That's why I have stated that this whole process is a set up. It is all seems unreal. Are they really one meeting a way from setting diagnostic clinical criteria? From many of their questions, they seem totally clueless.

You have stated that you think there are problems in the background as far as them actually providing a report. I would hope so and wasn't this then a total waste of time and money?

Please don't take these comments personally. Under the circumstances, you were excellent!

 

[Undisclosed]

I'm sorry @Denise that you felt that these comments out there were insulting to you. You certainly do not deserve that. As I personally relayed to you, I felt proud of you and thought you did a real good job portraying the truth about this disease. I especially appreciated the fact that you kept pressing the importance of neurocognitive problems and the hallmark symptom of PEM or PEC (collapse). Those are two key issues to drive home.

Many would have preferred if we had all boycotted the meeting since they feel that there is no legitimacy to these proceedings and they do not want patients/advocates to take part in it.

I feel that since we did have representation, I am really glad that you took it upon yourself to attend despite the fact that it took such a large toll on your son and I'm sure yourself too. I hope that you all recover quickly.

My personal frustration was in the fact that this was a great opportunity to drive home the fact that we need a strict set of criteria - actually I would have told them to adopt the CCC for now as our experts have advocated.

The real problem is with the whole process and with the agenda that they have set for the meeting. I would have hoped like many others have stated that they would have asked some of our many experts who have had clinical experience treating thousands of patients to come and speak. I am dumbfounded that they did not feel the need to do that.

I also understand that you were restricted in answering and following their questions. That's why I have stated that this whole process is a set up. It is all seems unreal. Are they really one meeting a way from setting diagnostic clinical criteria? From many of their questions, they seem totally clueless.

You have stated that you think there are problems in the background as far as them actually providing a report. I would hope so and wasn't this then a total waste of time and money?

Please don't take these comments personally. Under the circumstances, you were excellent!

Exactly -- @Denise, you did an excellent job

 

[Nielk]

Leonard Jason's presentation slides at the IOM meeting: https://docs.google.com/file/d/0B_h9k_7e7vTcMEpOOHhiSzdQbzg/edit

 

[Nielk]

The meeting's videos are out: https://m.youtube.com/playlist?list=PLGTMA6QkejfinnREnfX1fGQqdtOo3Xdud

 

[rosie26]

Perhaps we need to present severe ill ME patients via video live from there beds one time, those who are too ill to speak. It might speak louder than words. I would have offered myself up for this in my severe years. I get upset whenever I think of the severe ME patients - they are in a desperate hell.

 

[Denise]

Perhaps we need to present severe ill ME patients via video live from there beds one time, those who are too ill to speak. It might speak louder than words. I would have offered myself up for this in my severe years. I get upset whenever I think of the severe ME patients - they are in a desperate hell.

PLEASE consider having people help make and send DVDs of patients who are very severely ill!


The IOM ME/CFS Study
Phone: 202-334-3169
Fax: 202-334-2685
Email: mecfs@nas.edu

Mailing Address
Keck Center
500 Fifth St. NW
Washington, DC 20001

 

[Firestormm]

Occupy CFS:

IOM: Sum of the Whole Matter

 

[jspotila]

Occupy CFS:

IOM: Sum of the Whole Matter

Ah thank you, @Firestormm! I was just popping in to post the link in case people are interested in it. Lively discussion shaping up in the comments, too.

 

[Leopardtail]

Why on earth is the IOM paying to fly a 'psychologist' over from England, put her up in a hotel in order to speak for 30 minutes when she is in fact not qualified to speak on the neurocognitive impairments of ME/CFS at all?

Kina,

My response to this post may surprise you given my vehement dislike of overbearing psychological views in ME/CFS treatment and management. Put simply, if psychology has to be present on any such panel and expert opinion for it to be considered 'scientific and balanced' and Megan Arroll could be considered easily the best of a bad lot. I state several grounds for this:

• She is when spoken to in person highly amenable to a mitochondrial view of the disease seeing psychology as 'only half the picture' and 'more suitable for some than others'.
• She works at a facility that offers both physical and mental treatment 'as a package'. That clinic also actively refers to endocrinology. Hence given sufficient support from us, neither likely to overly ruffle the feathers of the psychotics, nor hostile to our views. She presents a potential 'gateway individual' or semi trojan horse to gain positive and more productive engagement within psychiatry.
• I do agree that the clinic has slightly too high a percentage of psychology which is unsurprising given its directors however it's a softer and more practical model based on energy sparing and mood improvement. I do however understand this is unclear from the paper.

To win the psychiatric debate, we need to choose our targets, we are otherwise going to seem warlike and illogical. If we justifiably criticise the ideas of White, Calder, Wessley and support the less strident (e.g. Arroll) our prospects are better. Throwing the baby out with the bathwater won't serve our purpose.

Leo

 

[Leopardtail]

Incisive critique, in the BMJ Open, of Alex Howard and Megan Arroll’s study

‘A preliminary prospective study of nutritional, psychological and combined therapies for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in a private care setting’

BMJ Open 2012;2:6 e001079 doi:10.1136/bmjopen-2012-001079

Dr Keith Geraghty, Public Health Researcher, Manchester University, makes a detailed critique of the study in both his responses.

http://m.bmjopen.bmj.com/content/2/6/e001079.full/reply#bmjopen_el_6706

In similar vain to my comments above:

• She is a psychologist and will publish papers with a psychological bent.
• If spoken to in person however she regularly refers to endocrinologists and recognises the impact of thyroid hormones, adrenal insufficiency, insufficient dopamine production on mood - this is rare.
• Most of the papers on physical treatments are published by doctors in private practice and are low scale. Most publicly funding papers are psycho-bullshit by interested parties (eg. PACE) as are most of the peer reviews in ME, hence the comments about 'funidng and self interest' with respect to private practice really hold limited water. Acadameics live in a fantasy world where they do not recognise that professors of medicine e.g. Wessley are publicly paid to treat patients and have a vested interest in promoting therapies in their field in the spirit of 'jobs for the boys'. This differs markedly from the field of physics for example in which the individuals are more likely to be pure professional researchers and less likely to be generating employment opportunity in the other half of their employment.

The question we need to ask with IOM is 'which Psych do we want there?'.

 

[Undisclosed]

Kina,

My response to this post may surprise you given my vehement dislike of overbearing psychological views in ME/CFS treatment and management. Put simply, if psychology has to be present on any such panel and expert opinion for it to be considered 'scientific and balanced' and Megan Arroll could be considered easily the best of a bad lot. I state several grounds for this:

• She is when spoken to in person highly amenable to a mitochondrial view of the disease seeing psychology as 'only half the picture' and 'more suitable for some than others'.
• She works at a facility that offers both physical and mental treatment 'as a package'. That clinic also actively refers to endocrinology. Hence given sufficient support from us, neither likely to overly ruffle the feathers of the psychotics, nor hostile to our views. She presents a potential 'gateway individual' or semi trojan horse to gain positive and more productive engagement within psychiatry.
• I do agree that the clinic has slightly too high a percentage of psychology which is unsurprising given its directors however it's a softer and more practical model based on energy sparing and mood improvement. I do however understand this is unclear from the paper.

To win the psychiatric debate, we need to choose our targets, we are otherwise going to seem warlike and illogical. If we justifiably criticise the ideas of White, Calder, Wessley and support the less strident (e.g. Arroll) our prospects are better. Throwing the baby out with the bathwater won't serve our purpose.

Leo

We shouldn't be having a psychiatric debate about a physical illness.

We are not choosing our targets -- the IOM is choosing who speaks there. She shouldn't have ever been on their radar - ever - period. She was a dangerous choice. It's moot now because they uninvited her.

 

[Leopardtail]

We shouldn't be having a psychiatric debate about a physical illness.

We are not choosing our targets -- the IOM is choosing who speaks there. She shouldn't have ever been on their radar - ever - period. She was a dangerous choice. It's moot now because they uninvited her.

I would also prefer they were not involved at all.... but it is not likely to happen for decades. so far now would we rather have Wesley there? I would strongly prefer she published her newer and more balanced views though, .... whether a psych journal would want to publish her more moderate thoughts is another issue.

 

[alex3619]

Perhaps we need to present severe ill ME patients via video live from there beds one time, those who are too ill to speak. It might speak louder than words. I would have offered myself up for this in my severe years. I get upset whenever I think of the severe ME patients - they are in a desperate hell.

A composite clip made before hand of video testimony might do it. It does not even have to be long per patient ... its probably better if it isn't as they will crash less. Five minutes with testimony from ten patients, clipped together. It also does not matter if they cannot speak, or cannot do it or say much. That is silent testimony.

 

[Leopardtail]

We shouldn't be having a psychiatric debate about a physical illness.

We are not choosing our targets -- the IOM is choosing who speaks there. She shouldn't have ever been on their radar - ever - period. She was a dangerous choice. It's moot now because they uninvited her.

I have had both forms of experience with the field Kina (positive and negative).

One the one hand my long standing disputed diagnosis of depression despite almost every ME symptom was turned over by a psychiatrist who also help me write to a diabetic / endocrine specialist regarding interaction of the two diseases. He also referred me to a CBT specialist who used an 'energy sparing' model that assumed no aetiology. They also dealt with hardening to deal with family ignorance and abuse that subsequently prove vital dealing with nasty doctors. I realise that model is rare.

On the other hand I was then sent to a Wesley school clinic that sent lies to my GP, screwed up my diabetes, caused me to lose ten nights sleep and well and truly screw up my ME so badly it took a year to undo the damage. I forgot the positive due to rage over this group and the damage done by Wesley/NICE,

As you can imagine, I find it very easy to rant, reject psychology and be downright venomous towards the field, however I try to continuously remember that we have our friends (Jason having been recently mentioned) and want to ensure we don't piss off our friends while dealing with our persecutors thereby giving them ammunition.

At least one of our persecutors is I suspect monitoring these forums, hence the caution.

 

[Undisclosed]

...
At least one of our persecutors is I suspect monitoring these forums, hence the caution.

I know of more than one of our 'presecutors' monitoring Phoenix Rising. Why the caution? Let them hear us loud and clear. Psychobabble has no place in defining ME.

 

[WillowJ]

If people want to say supportive psychology has a place in aiding ME patients the same--same methods and philosophy, not just same therapy title with different applications depending on how they view the patients' personal attributes--as in any well-characterized chronic debilitating illness, that would be perfectly appropriate.

However that is not what we were offered any of the times when we object.

 

[alex3619]

I am not sure much of psychiatry is a problem with us, but I am very sure psychogenic psychiatry is. Its the shakiest area of psychiatry, more guesswork and rhetoric than anything rigorous or rational. I have long said many of us need some psychiatric/psychological help to assist us with coping. However so long as too many psychs are into psychogenic babble we quite rightly are unhappy with psychiatrists.

There are exceptions of course, like Ellie Stein. If I were in Canada and needed to see a psych, I would be happy to see her. I met her once. She is deeply committed to ME and CFS, and anti-psychobabble.

 

[Andrew]

She was invited because they needed more input from people who use the weakest criteria in the world.