My recovery from Chronic Fatigue and Autonomic Disregulation

[minkeygirl]

People need to take responsibility for their actions or inactions regarding treatment.

I did nothing for years. I have myself to blame for that, not PR where there are myriads of treatment options discussed.

 

[Farley]

In my opinion, and that is all it is, the repeated statement's about there is no 'cure' and that this or that 'can not be cured' is soul destroying to me, and downgrades the struggle of many a person that still has hope.
If evey new avenue of treatment and research was greeted with such dismissal, Its possible that we might slam the door in the face of the very person, that may one day have the answers we all long for.
I pray for us all that this will happen one day, and free us from this hell, intill then I believe we need to keep an open mind.

 

[sillysocks84]

In my opinion, and that is all it is, the repeated statement's about there is no 'cure' and that this or that 'can not be cured' is soul destroying to me, and downgrades the struggle of many a person that still has hope.
If evey new avenue of treatment and research was greeted with such dismissal, Its possible that we might slam the door in the face of the very person, that may one day have the answers we all long for.
I pray for us all that this will happen one day, and free us from this hell, intill then I believe we need to keep an open mind.

Yes! My husband makes me say every night "I will get better. I am getting better" This was hard to do at first and sometimes still feels weird. BUT it makes me happy after. And maybe we shouldn't deny ourselves that. What if we are denying emotions that can lessen our symptoms? Do any of us have all the answers? I understand we are all at different places and I do respect that. I'm sharing where I'm at.

 

[ukxmrv]

In my opinion, and that is all it is, the repeated statement's about there is no 'cure' and that this or that 'can not be cured' is soul destroying to me, and downgrades the struggle of many a person that still has hope.
If evey new avenue of treatment and research was greeted with such dismissal, Its possible that we might slam the door in the face of the very person, that may one day have the answers we all long for.
I pray for us all that this will happen one day, and free us from this hell, intill then I believe we need to keep an open mind.

so where are you seeing the no hope, no cure message then? I hope you aren't slagging off Phoenix Rising as well.

I'm constantly trying new treatments and welcome new research. That seems to be the message of this forum.

 

[Mij]

@Farley I'm sorry you feel discouraged from reading posts that don't give you hope. We ALL have hope.

I personally dismiss any treatment that implies that emotions are at the root cause of M.E.

 

[PeterPositive]

Given the multi-factorial nature of CFS/ME and all other acronyms I don't find it surprising to read about remissions correlated with different therapies and healing modalities.

It's pretty clear that each of these different factors (mental stress, physical and psychological trauma, infections, toxic burden, genetic predispositions etc...) will play different roles in different individuals and it is expected that there won't be a generic "catch all" cure. Be it a single drug, protocol or therapy...

If my CFS is caused by heavy metal toxicity and I obtain full remission from an amalgam removal and chelation protocol is it sensible to claim that this wasn't CFS in the first place?

Also, I am not sure if it makes any sense to jump at the throat of people claiming to be healed without taking FDA approved drugs.

I understand the skepticism, it's necessary to avoid jumping to wrong conclusions, but skepticism has nothing to do with distrust or personal attacks.

 

[whodathunkit]

goes bad-mouthing us behind our backs.

Ummm...she's not doing it behind anyone's back. She POSTED THE LINK HERE so everyone could read it.

Further, most of the forum is just as public as her blog is. And LOTS of things get publicly slammed around here. Slamming doesn't just go on in "Members Only".

Just sayin'.

That doesn't mean it applies in any way to me or to ME.

It's not about YOU, SOC. She was posting for the benefit of *EVERYONE*. The diversity that is PR. Not just the people who have been diagnosed with ME.

If you actually read the blog, you hafta note she never said she had ME, which may be a whole separate thing that has been lumped in with Chronic Fatigue or mitochondrial illness because doctors don't know what to do with all these symptoms.

She also never advocated the therapy as a cure for everyone. It was all about her own experience with her illness, on PR, and with Reverse Therapy.

At any rate, if you don't think it will benefit YOU, then by all means don't read it. But it may be applicable to some people, and give them ideas that could be helpful.

I'm personally taking a look at Reverse Therapy. I hadn't ever heard of it before. I'm at the point where I"m a little stuck. Quite a big improvement physically but my life is still a lot the same in ways that are not entirely pleasing to me. It's discouraging, which is actually becoming somewhat of a drag on the physical. I wanted to be better than I am right now. The right mental approach could help me make the most of my new physical improvement. And if not, oh well. I'll move on to the next thing and still be happy for @sueami.

Her post helped *ME*.

 

[Farley]

I wasn't slagging the site off at all, just that I thought it negative to dismiss storys of people getting well on the basics that one believes its not possible.
@ukxmrv , sorry if it came across like that, its not the only place I have heard this opinion and sure it won't be the last.

 

[sillysocks84]

And I have a regimen I am trying (and have gone through many) that I do in addition to trying positive thinking and verbalization.

 

[whodathunkit]

I hope you aren't slagging off Phoenix Rising as well.

I LOVE PR. I hope that is abundantly clear to anyone who isn't ignoring my posts by now.

PR has given me my life back. It's like a miracle for me.

But I do still completely understand what sueami is talking about and understand why she left. It's not a phenomenon unique to PR but happens on almost all forums. It doesn't get to me much any more, possibly because I can be a little.."caustic"... at times, myself, but it's a very real thing.

It should stop, especially on a forum where people are here because they're sick.

I think it's good to bring problems like this out into the light. Sucking it up in the interest of not slamming anything allows stuff like this to fester and the people perpetrating the behavior think their behavior is okay because no one ever steps to them. We all need periodic reminders that not everythign that goes on in our heads is okay with other people, and we may need to moderate our public approach accordingly.

 

[Maria1]

It should stop, especially on a forum where people are here because they're sick.

I think it's good to bring problems like this out into the light. Sucking it up in the interest of not slamming anything allows stuff like this to fester and the people perpetrating the behavior think their behavior is okay because no one ever steps to them. We all need periodic reminders that not everythign that goes on in our heads is okay with other people, and we may need to moderate our public approach accordingly.

I second that. I would say you took the words out of my mouth, but actually you managed to voice my thoughts and feelings so much more capably than I can right now.

I appreciate the opportunity to investigate all the different treatment approaches, if I so wish. Nobody has a right to take that away from anybody else. I don't think @sueami was doing that by sharing her recovery story; if people aren't interested isn't it best to just keep quiet?

 

[Hip]

Mental health treatments treat mental health conditions.

But ME/CFS involves both mental and physical symptoms, so is in part a mental condition. Brain fog is mental, sound sensitivity is mental, emotional lability or emotional sensitivity is mental, the anxiety disorder that some patients have is mental (although this is considered a comorbid condition).

Throughout her story she basically says that following Phoenix Rising kept her from trying the therapy that would cure her. Also there is the accusation that Phoenix Rising attacks people who post recovery stories.

But that's an accurate account of what happens on PR, when someone posts a story of a ME/CFS recovery from a psychological treatment, or from a body-mind treatment such as yoga — they get scorn poured upon their story.

I do not see sueami's article as slamming PR; she is just pointing out what happens here. And her article is something we should take note of, rather than pour further scorn on.

If some very small minority of ME/CFS patients are benefiting from, or even recovering, by means of psychological therapies, is it ethical to take an opposing stance on such therapies on this forum? I know not everyone on this forum takes an opposing stance, as is evident even in this thread; but many do.



In my analysis, there are competing imperatives operating here. On the one hand, I think more or less everybody on this forum, myself included, is strongly against the ideas put forward by the Wessely School, that ME/CFS is "all in the mind". I think we all agree that this view of ME/CFS is fundamentally wrong, and causes a huge amount of damage, both to the way doctors think about and treat ME/CFS patients, and to biomedical ME/CFS researchers trying to get grants to study the physiological aspects of this disease.

So the basic imperative that I think nearly everybody follows here is: stop the Wessely School!

However, because of this very imperative, the small minority of ME/CFS patients who do derive benefit from a psychological therapy get caught up in the crossfire, and may be seen as traitors to the cause.

Yet no ME/CFS should be put off trying a treatment, even a psychological therapy, that may help them. That is the other imperative: much of this forum is focused on helping ME/CFS patient find effective treatments.

So how do you balance these two competing imperatives?



For me it is appalling that ME/CFS is portrayed as an "all in the mind" condition, and I fight vigorously against such ideas. I think even in ME/CFS patients such as sueami (whose ME/CFS was started by a viral infection), the disease is still primarily driven by physiological factors. However, in some patients, locked-in mental stress may conceivably be affecting physiology, and once this stress is released, physiology may be altered in such as way as to then clear viral infections, or quell autoimmunity. So we don't want to discount this.

We don't want to throw the baby out with the bathwater on this one.

The bathwater is the Wessely School. The baby is the fact that a small minority of patients — I would think a very small number — may potentially benefit from psychological therapies.

I am not offering any answers here, but rather just analyzing the situation.

 

[Strawberry]

This is pretty embarrassing and shameful to read today.

nuff said.

 

[Gingergrrl]

I think the reaction is due to the fact that we face this attitude in the outside world (that ME/CFS or chronic Lyme or Mast Cell Disease or Mold/Biotoxin illness, etc) is not "real" and can just be cured by psychological treatments or doing yoga etc. So it can be extra upsetting to face this on PR, too (at least for me.)

I was a social worker/therapist for 16 years and I actually endorsed and used CBT when appropriate with both individuals and groups. But CBT is a coping technique and does not cure biological illnesses like ME any more than it can cure cancer. If CBT could make me stand and walk without wheelchair or eat food without anaphylaxis, believe me, I would join the party in a second.

We need to question claims of cure whether from the PACE trial authors or posters on PR. Critical thinking is not a bad thing. I currently have a treatment that is bringing me some improvement (endorsed by my mold and MCAS docs) and if it continues, I will post about it and anyone can ask me absolutely any questions about it (good or bad) and I will be here to respond.

Am not posting yet b/c it's only been one week and I need to increase dose and add a few other things to the protocol. Also don't want to "jinx" myself by posting it too early! But if I sustain any level of improvement, I will post and explain my experience in case it can help even one person out there. And I will not be bashing PR in the process. It's just not necessary IMO.

 

[Undisclosed]

We provide the capability to report posts when a member feels they are being personally attacked, harassed, treated badly etc, etc,. Not one post was reported in relationship to sueami's recovery story, on any thread she started, at any time until yesterday.

'Forum -- a place, meeting, or medium where ideas and views on a particular issue can be exchanged'.

If it appears that a member might have the symptoms of something else, our website provides a vehicle to allow these discussions -- all opinions are welcome as long as members are not resorting to personal attacks. On a cancer forum, a member might post a picture of what they think is skin cancer, and it would be completely acceptable for a member to suggest it looks like a rash. Due to the press, the medical profession, the BPSers, many do not have a clear picture of what ME/CFS is, conversations that point out that a member may not fit the criteria should be welcomed to assist in the understanding of the illness and it may help members to decide to try a protocol/treatment etc. to help with certain symptoms.

Our forums are a place where members should be able to disuss their experiences without personal attacks. It's also a place where members should be able to discuss any alternative views and differing opinions safely. It works both ways. I see a huge amount of criticism directed at members solely because they decided to give their opinions about something they are very passionate about and/or disagree with something a member has claimed. These days there are very few personal attacks involved in recovery threads. We remove those that are.

If you want to be on a website that doesn't allow critiques; doesn't allow members to educate others about ME; that doesn't allow members to criticize the use of the term 'chronic fatigue'; doesn't allow members to get annoyed when psychological therapies are claimed to cure a physiological illness; that doesn't allow for anything but lovely positive comments, then Phoenix Rising is NOT the place to be a member. It's not a 'behaviour' to question a diagnosis, it's not a 'behaviour' to discuss symptoms, it's not a behaviour to be constantly demoralized because ME is being conflated with lifestyle problems or as being an illness all the mind. If a response includes a personal attack on a member, that needs to be reported and rectified by the moderators. Referring to members who choose to respond without agreement, or choose to post a criticism, or just choose to say their piece does not mean these members have caustic or any kind of negattive personalities. The negative comments related to members on this thread are an attack on some members and thus fall under a rule breach.

'Forum -- a place, meeting, or medium where ideas and views on a particular issue can be exchanged'

This includes all views. If only positive comments are allowed, it is no longer a forum.

Why are members not allowed to be critical and ask questions and it's perfectly fine for members to criticize members because they don't like any kind of disagreement or just want to control the direction of a discussion.

If you are a person that can't tolerate a discussion that you don't agree with, can't tolerate constructive criticism, can't accept the views of others and then choose to attack them for that, then perhaps you should find a forum where only a positive discussion is allowed. There is also an option of ignoring members too. It is a problem when members start demonizing each other for merely having an opinion, and/or for trying to add a point of view. How about tolerating each other and not attacking a portion of members who like to discuss things or have a different opinion. This thread is closed because it has become off-topic and peppered with attacks related to Phoenix Rising and its membership.

If you would like to discuss this further, by all means start a thread in the moderation forum but the bottom line is -- the moderation team will not moderate opinions, comments, criticisms that do not fall under a rule breach. We have a large membership full of people with all sorts of opinions. Let's get along and tolerate each other and the opinions of each other.