All my fault?

[justy]

I fear we may have scared @annedav away with our intense discussions, and I hope im not the only one who hopes that is not the case.

We can get a bit carried away with discussions on here, and forget we are talking about real people with feelings, and not just abstract ideas.

 

[MeSci]

I fear we may have scared @annedav away with our intense discussions, and I hope im not the only one who hopes that is not the case.

We can get a bit carried away with discussions on here, and forget we are talking about real people with feelings, and not just abstract ideas.

I haven't forgotten. @annedav is here for support and info, like most or all of us. And it's the right place.

Hope you're OK, @annedav.

 

[Mij]

@justy good points. For those of us who have been ill longer can look back and understand the different changes over the years too. My illness is certainly not the same as say, 12-16yrs ago. I try to keep an open mind.

 

[Valentijn]

I just want to be clear that the poster of the thread talks about then crashing very seriously afterwards, not being able to sustain this level of activity.

This has been much discussed elsewhere on PR in relation to the Lightning Process - which may convince some people that they can walk further, push harder for some time after the course. Many of these people then crash harder than ever after a period of time and their functional ability then decreases again - often to worse than they were before they started. This aspect of LP has been talked about on PR without anyone ever claiming those people didn't have M.E - in fact it is sued as evidence by PWME that LP doesn't work on PWME.

It can also be a matter of different symptoms being the most limiting at the time. There were times when I couldn't have triggered PEM even if I wanted to, because my OI kept me from standing up for more than a minute at a time.

A lot of ME patient do get fairly intense autonomic and/or cardiac symptoms which prevent them from doing much of anything. Whereas if OI is mild and there are no cardiac symptoms, someone might be able to push themselves to do quite a bit before crashing spectacularly.

And on the flip side, debilitating OI (which might put someone in a wheelchair) can be temporarily compensated for by getting angry, or becoming intensely active, which raises blood pressure to a nice level. However that too becomes unsustainable when the payback hits.

My guess would be that someone going from a wheelchair to walking for miles either has PEM with no OI or cardiac issues, or has simple OI with no cardiac issues and little or no PEM issues. Usually the later would be ruled out by crashing, but there is a tendency for people to confuse OI symptoms with PEM, if they're simplifying a crash to mean "feeling very sick after exertion".

 

[MeSci]

Is it not possible that @annedav could simply be mistaken about (what caused) improvements?

How many of us understood ME well at the start? How many of us had serious misunderstandings, fostered by years - even decades - of brainwashing and incorrect advice, but learned a huge amount by coming here, and realised our errors?

Would a troll seriously talk about crashes after remissions? Would they be expressing doubts about the psychology-and-exercise-based 'cures' and asking for advice?

I have read a number of threads promoting psychoquackery, and they are generally pretty evangelical and full of certainty.

I really don't think this is one, and there could be a very hurt, distressed, sad person who has been driven away after finally finding a place of help and support after 20 years of mistreatment. She could even have a new misdiagnosis. In which case, shouldn't we be helping her to work through this and give some advice on further tests, etc.?

When I was still healthy and hearing about the controversy surrounding ME, I had to decide how to think about possible sufferers. I weighed up the pros and cons.

Believe a healthy person when they say they have it? The positive side is that the person is supported. The worst that can happen is that I look a fool.

Disbelieve a sick person? The 'positive' side is that I can feel superior and clever, and get that 'us and them' buzz that, sadly, can come from being in a more-powerful group disparaging a weaker group. The worst that can happen doesn't bear thinking about.

I decided that it was better to believe people.

 

[justy]

Thanks @MeSci for your eloquent post.

 

[MeSci]

@MeSci I am confused what you mean by a "qualified apology" and every word that I have typed in this thread is what I truly feel. I said I have never posted anything with the intention to hurt someone and that is the truth. Having a differing opinion is allowed on PR and I felt I was respectful and explained where I was coming from. I don't see people apologizing every time they have a different opinion or expressing doubts about something posted but I did and I meant it!

I did not understand ME in the beginning when I was mildly affected and had no idea what my diagnosis was. I kept searching and I kept pushing myself (although I would not refer to it as being brainwashed!) During that period of being mildly affected, I was still working full-time and could still walk for miles. And there are many people on this board who are mildly affected and can still work or exercise and that is great!

However, these same people who are mildly affected are not simulanteously reporting to be wheelchair bound and then getting out of their wheelchair due to "positive thinking" "Mickel therapy" or "visit from a loved one" and THEN walking miles. This is as illogical to me as someone bed-bound on a feeding tube just ripping out the tube and going to a restaurant b/c of positive thinking or a visit from a loved one. I found it mocking as if others should be able to repeat this miraculous feat if only they too did the right positive thinking.

I did not ever refer to the person (or anyone on PR) as a troll. Any person can quote or express doubts about any treatment and ask for advice and than any other person here can hold an alternate point of view as I am doing.

I am not sure how this pertains to what I am saying? I have read hundreds of threads since I joined PR in which anything related to psych or social work (my field) is trashed as quackery across the board and except for once, I never responded. This is not what I am doing here and I am responding to a specific point (re: getting out of a wheelchair that one truly needs due to positive thinking.) That for me, is quackery and quite dangerous to promote or endorse.

I think everyone on here has been hurt, distressed, and sad and I am not saying that the person who posted does not feel those things. I am responding to a specific point which was hurtful for me.

I am really floored that you think I am posting this to feel "superior" or "clever" or to get a "buzz" from being in a "powerful group to disparage a weaker group." This is so far from my personality and how I live my life that I don't know whether to laugh or cry. I do not view this board as being in different groups but maybe I am naive. I have close friends here with different diagnoses, different levels of functioning, from different countries, different backgrounds, etc, and I love all equally. I really think you are placing an interpretation on my post which just is not there. I get no "buzz" from posting this and am actually finding it very stressful and is again making me reconsider if I need this added stress.

Please, @Gingergrrl, what I said in my message was not referring specifically to you. When I was talking about how I decided to regard pwME before I got it, I was referring to myself - no one else. It was illustrative. I can't always make such things clear, as I have ME and the usual cognitive problems.

Nor was I accusing you of accusing anyone of being a troll.

As I have said in the 'Are you depressed' thread, after you expressed your distress about the perceived attacks on your former profession, I use the words 'psychoquack' and variations thereupon to refer to the 'therapies' designed to brainwash people with ME, and similar unethical practices. I am not referring to the whole of psychology and social care, as I also explained there, referring to positive experiences I have had with these.

I think we have to be especially sensitive to people who are new here, as they already feel like outsiders, so we need to make allowances and try to be welcoming. Reading that one's (presumably-sincere) belief that Mickel therapy enabled her to walk for a while is mocking people for whom this is not the case may be very hurtful, especially if one is new to all this. The person may have been misdiagnosed again, as I said. If so, that is not her fault.

I have found your own messages here to be overwhelmingly positive, hence all the 'likes'!

Please don't take things personally that are not directed at you personally.

 

[MeSci]

@MeSci I apologize if I took what you said personally if it was not aimed at me. I felt it was directed toward myself and Jeff and without wanting to speak for him, I was just responding from my own perspective.

I suspect we will not see eye to eye here and that is okay! I don't think I will post too much further in this particular thread as it's become very stressful to read and I started a new medication today and need to focus my energy on my health right now.

I am stressed too.

 

[MeSci]

@MeSci -

Thanks. You made some good points, and you made me think about this more deeply.

When I read the person's posts, the content was so "out there," IMO. I was not alone in my perception, and I'm generally one to speak up. But I do think you're right that, if in doubt, it's better to err on the side of not hurting someone.

I was feeling toyed with and mocked by the original poster, and I was feeling angry about that. I wasn't feeling "superior" or "clever" in any sense, and I also wasn't looking to cause a division on this board into "us" vs. "them." Everyone here has enough stress already.

Let me emphasise that 'superior' and 'clever' were referring to how I, and other healthy people (as I was at the time) might feel towards people with an illness in which they do not believe. It was not a direct analogy with the current situation. I am sorry if this wasn't clear, but thought it would have been clear from my reference to 'a more-powerful group disparaging a weaker group'. I can't see how this could apply here, as it related to sick people possibly disbelieving that another person was sick - the opposite in fact.

But my intention was not to criticise and increase tension - it was to try to ease the tension so that the originator of the thread felt safe to start posting again. I am mortified that it has ended up like this.

If we are not sure whether a statement is correct, I would personally tend to ask them "Are you sure this wasn't a coincidence/placebo effect?", or "Such temporary remissions have indeed been reported but may be coincidental or placebo effects" and "Have you considered the possibility that you may still not have a correct diagnosis?" rather than say anything indicating suspicion or accusation.

But we all get tired, and most of us get brain-fogged and it is not always possible to get the wording right.

 

[taniaaust1]

I understand that it is indeed possible to fool your body temporarily, so that it may appear that you are in remission or recovery, until reality sets in in the form of another crash. Alternatively, spontaneous remission can occur.

Also it does seem to be possible to get a temporary lift from positive experiences. For example, I find some types of music very energising. When I hear them my legs become temporarily light, and I am able to dance around for a few minutes.

Re autonomic dysfunction, I'm not aware of tests for all types. Doesn't it include things like poor temperature control, fluid balance control, etc? I know tests exist for POTS, but only a subset of us have this. I don't think I had significant sinus problems for the first few years either - that became bad much later, until I started the leaky-gut regime.

Doing the thing where one convinces oneself one isnt sick thou dont last for long eg your example of dancing for a few minutes and there is generally backlash to it if its normally something the person can not do.

Yeah, not all have POTS, Julia Newton I think it was found that most of us more commonly have orthostatic hypotension or NMH (something like that. There is several different ways the autonomic dysfunction may show up in the BP or heart rate. We may not have same type but its usually there of some kind.

I thought more about what poster said, at one point I was walking 2 hours a day.. interspersed with 45 s seconds of running at times as I couldnt run longer then about 50 seconds at a time or my muscles would die, become hard to move and I'd go into pain (it was an experiment to see if improving my fitness helped or not).

To do that 2 hrs of exercise per day at that point of time I could did nothing else. My POTS was extremely bad at that point eg standing still for LESS THEN ONE MINUTE could collapse me, so I'd have to walk on the spot at traffic lights. My POTS was bad enough with not being able to stand for one minute that I should of used a wheelchair when out (I was collapsing like shopping cause of checkout). I also had to stay cool during this or I'd collapse.. once again a POTS issue (so I did this exercise very late at night and in winter.. while often raining).

So anyway.. I do get how someone with ME could exercise ie walk for a couple of hours per day and even have to use a wheelchair at same time at times.

(but I still dont understand how a person without dysautonomia can be bad enough to need a wheelchair but still be able to walk a couple of hours per day.. unless all their effort is going into that walking so they are wiped out after and need chair but I cant imagine recovring from a ME wipeout to point of using wheelchair but still able to go walking again the very next day and day after etc.

It takes longer to recover then that unless one is wiping out due to dysautonomia eg POTS). Im still confused at this case.

(for anyone wondering, it didnt help me at all.. it didnt.. sadly my POTS was no better either. I had really really thought that would of at least helped the POTS!).

After doing this almost daily (thou some days I did rest between) and not doing anything else so I could do this exercise for 6-8 weeks.. my level of fitness was no better at all except I could run for about about 7-10 seconds longer!! (a gain of about 1 second of increased ability to do aerobic exercise per week!! Very very discouraging for someone putting in so much time to attempt to get fitter).

I was watching the Biggest loser at the time and some of them in same time period I was doing this, had gone from being only able to walk for about 2 minutes (puffing), they went to being able to run a long (10km) marathon quite well in that time non stop! I didnt even gain even close to an extra minute in my running after 2 months.

Based on my experience, the fact exercise fixes "ME" is absolute crap. I didnt notice anything different about my strength either (thou my legs may of looked a little less flabby).. doing things wasnt any easier. There is something very very wrong about our bodies going on...

I would of been far better off using that energy to do other needed things. I wasted 10 hrs per week on exercise 60-80 hrs exercise all up (doing nothing else) for 7- 10 seconds aerobic gain after 6-8 weeks. That's the kind of thing which makes one just want to sit down and cry esp when we are told things like GET help.

...............

To the original poster. I really hope you manage to figure it out. I think you need to do whatever you feel is right and helps you and not be listening to us as your case is different to most of ours.

 

[taniaaust1]

http://www.dailymail.co.uk/femail/a...lthy-eating-recipe-app-number-one-iTunes.html

This is a story of a beautiful girl ( with extremely wealthy and well connected parents)who IMO has ME but the best doctors in the UK could not figure it out. A consultant was around at the time of her visit to the hospital and he promptly calls her condition without any hesitation on his part....POTS. Well I guess it's a thought. An easy one to remember. better than the M.E.CFS nonsense.
The story made a large article too in the Daily Telegraph. I like the sound of her blog. How about it then.......do we all simply have POTS from now on?

No I think its very wrong to just say POTS if one has ME/CFS. Its something my own doctor has done when I got my doctors notes, I saw she had wrote I was there for POTS every single visit except one which mentions ME too.

Just having POTS is quite different to having ME. Some POTS patients are helped by exercise. POTS can be helped by raising head of bed etc ..something I havent heard ME patients with POTS generally say.

 

[taniaaust1]

What is of the most interest to me in this Ella story is that the Consultant cardiologist didn't mention M.E. CFS at all. So now Ella thinks she just had POTS. But all of her other symptoms were classic M.E. when I read about them. And she cured herself?? It can be done guys.

POTS also has many ME symptoms so people can confuse the two things easily, Im sure some who just have POTS get a wrong ME/CFS diagnoses. (I havent read of what Ella's symptoms were).

 

[taniaaust1]

I know someone who thinks of herself as recovered from using lightening process. I find it difficult to talk about ME with this person now because she's now of the mindset that stress is the major cause and mind over matter does work.

I find it difficult to talk to her about ME now because of this; because everything in her mind in relation to ME is now linked to LP.

She was never severely affected though, not ever in the 10 years ive known her, always out and about at meetings, get-togethers, meals etc. she always had a decent level of functioning that i could only dream of.

Its been a few years now and she's still doing ok! Driving, cycling etc. she's the only person i know who seems to have had long term positive effects from it, though at the same time she was one of the mildest affected people i've met so maybe the leap to recovery was a smaller one than that of a more severely affected. I can barely tell the difference in her from before treatment to after treatment.

I can get my head around easy enough a mildly affected person who may be improving anyway, saying they are recovered after lightening process. A wheelchair user suddenly recovering by lightening process (by this I mean not crashing due to it).. I wouldnt be able to get my head around a "ME" person doing that, I would think they had something else other then ME
...........

I appologise to the original poster for my posts. I do completely believe you when you say you are experiencing these issues. Im just not thinking you possibly dont have same illness. But then maybe it was just you didnt explain things well here..

I hope our posts dont put you off, they are just food for thought on what may be right and wrong for you. and being sick is NEVER someones fault. So be nice to yourself.

 

[taniaaust1]

Non-stop thoughts, which are normally termed racing thoughts, aren't a part of ME/CFS, but they can occur in anxiety disorder (which you may have), hyperthyroidism, bipolar disorder, and other conditions.

.

Thou may not be common, I personally find they can. I can get racing thoughts if I go into the "wired but tired" kind of ME fatigue crashing thing. Have you ever had the "wired and tired" kind of fatigue with your ME?

I think with anxiety some can also get faster thoughts (with my anxiety when I get it they dont race like they do with the wired and tired).

I was mulling over this thread last night and a thought popped into my head - an analogy if you like. M.E has different presentations and levels of severity, in much the same way that MS does.
If we use the analogy of MS then it can be seen that the primary progressive MS patient who is paralysed, incontinent, has swallowing difficulties and has such severe progression that they will die of the disease, looks like they have a totally different illness to the MS sufferer who has been diagnosed with relapsing remitting MS after numbness in their left hand caused them to drop things occasionally, and who also has blurred vision in their right eye.

Both of these above patients have the autoimmune illness MS. No one would say that that either one of them didn't have MS, just because they had different symptoms or the severity of the symptoms was greater or lesser in one or the other.

But in MS, they know that person has MS, in ME/CFS, it isnt uncommon for people to be wrongly diagnosed so that makes things tricker as are we really supporting someone if we dont say something when we are doubting they could have "this" illness? or do we let it known we have doubts (but certainly still believe the person is suffering and experiencing what they say they are.. it isnt about disabeliving the person is sick).

Some of us also dont even believe in some of the CFS definitions and others may believe the person needs to be at least 50% under what they previous could do to fit even CFS.

I dont think the issues with CFS diagnoses are comparable to MS which is clearly (well usually clearly, Ive heard of mistakes being made there too) diagnosed via tests so they dont have to base it on symptoms.

Also judgement of what the other has.. often forms what advice support a person may give. We all wish the best for the others here eg if the person doesnt get post exertional problems.. quite possibly exercise may not be harmful for that person and we could well be doing the person a disfavour by warning against exercise or some of the psych treatments.

It would be great when that day comes in which they can actually do a test and say who has the same illnesses and who hasnt so that person then can seek out the "right help" .. or to separate subgroups.

 

[taniaaust1]

I fear we may have scared @annedav away with our intense discussions, and I hope im not the only one who hopes that is not the case.

We can get a bit carried away with discussions on here, and forget we are talking about real people with feelings, and not just abstract ideas.

Hopefullly she's still reading and will get up the nerve to post again, I can understand that it may be scary. It is tough but if she's reading she should see no one here is blaming her, we just want to understand and hopefully support.

 

[Undisclosed]

Please note:

It is a rule breach to:

• attack a member's motivation for a post
• attack a member's character
• refer to a treatment that a member finds helpful in a contemptuous manner
• belitte a member using sarcasm
• question why somebody is present on the forum (accusing them of being a "mole" or a "troll")

All of these fall under a personal attack.

Please avoid jumping to conclusions regarding what members have said regarding their treatment and experiences. A good rule of thumb is to avoid making negative personal comments directed at any member. If you are sceptical, use constructive comments to address the content that you disagree with.

We have removed any posts that have breached the rules or are off-topic.

Thank you.

 

[Hell...Hath...No...Fury..]

This astonishes me. Are we talking about this Julia Newton?

@MeSci after reading the posts here, i decided to find out for myself last week Julia's opinion on GET as ive been seeing her a while and was also shocked to hear of @annedav 's experience in general as mine has been a positive one.

Kinda wish i hadn't now. I asked her outright what her opinion is of GET and she told me thats the only official treatment for ME right now and wanted to know why i couldn't do it. (I'm severely ill, bedridden and the only time i get out is to see her twice a year which takes months to recover from even with a wheelchair)

I was so shocked i actually didn't reply. She even asked me again why i can't do GET and i was too ill to get into it so i talked about something else.

But this thread has enabled me to be a lot more wary in future.

Because of Julia's advice about Dr. Myhill i was also going to not bother with her mitochondria testing but i now feel i'll be going ahead with that now.

 

[Gingergrrl]

I asked her outright what her opinion is of GET and she told me thats the only official treatment for ME right now and wanted to know why i couldn't do it. (I'm severely ill, bedridden and the only time i get out is to see her twice a year which takes months to recover from even with a wheelchair)

I was so shocked i actually didn't reply. She even asked me again why i can't do GET and i was too ill to get into it so i talked about something else.

@Hell...Hath...No...Fury.. Wow, I am really surprised and saddened to hear that. I am not in your country but was under the impression that Julia Newton was one of the premier ME/CFS experts in the UK from other threads. How could she not understand that you are bed and wheelchair bound and cannot do GET? That is disappointing to learn. Are you going to keep seeing her? I don't want you to end up injuring yourself trying to follow her treatment plan.

 

[Hell...Hath...No...Fury..]

@Gingergrrl if i hadn't of asked this because of this thread I may never have known that was her opinion.

I'm being treated for POTS by her, though everything i've tried has made me ill, she knows I have ME but has never discussed this with me when i mention it she only discusses the POTS.

She hasn't officially prescribed GET for me, but now that i've drawn attention to it... I'm now worried that she will at some point.

If this did happen there's not a chance I would go ahead with it, (nor could i) unless the nhs send out GET specialists to people's bedrooms these days, especially not when my health is at the level it is right now.

The last appointment was definitely an eye opener.

 

[Valentijn]

I am not in your country but was under the impression that Julia Newton was one of the premier ME/CFS experts in the UK from other threads. How could she not understand that you are bed and wheelchair bound and cannot do GET?

She's not an ME/SEID specialist. Her primary interests seem to be OI and aging. She has done some solid and reputable research into ME/SEID, but in the context of OI thus far, and a bit regarding muscles I think. But I doubt she's ever taken a close look at the supposed support for using GET, nor the criticisms of it in ME/SEID.

She's probably looking at her ME/SEID patients purely as OI patients, and building up muscles is often useful for uncomplicated (non-ME/SEID) cases of OI.