All my fault?

[MeSci]

and toned and modelling?

I think I was pretty fit, but never been good-looking enough to model! (I don't think any dietary change would correct that.)

 

[justy]

I'm finding the tone here of disbelieveing the poster a bit unpleasant.

It is WELL documented that many M.E patients can push themselves beyond their limits at times, suing adrenaline and then crash hard after. I have had this experience MANY times and I don't suppose anyone here wants to start asking me if ia am for real.

Early in my illness I foten felt better when I was with my mum and that made me think it was in my head. In reality I just push harder when family are around and always collapse afterwards.

I also have at times gone from using a wheelchair to being able to walk further, and then crashed again. M.E is a fluctuating illness and some of us have good days or even weeks followed by being completely bed/sofa bound again.

It really isn't for anyone else to say if someone on here has M.E or not.

The poster has enough issues dealing with their stressful thoughts without the negativity.

Many people with M.E have Lyme disease and that also can be a fluctuating illness, as can MS which is similar.

I have had these exact same experiences and wondered for years if it was in my head - we are here to support, not join in the judgement.

xx

 

[ukxmrv]

Maybe the "Ella" discussion could be taken onto another thread as it is detracting from the original poster? They don't seem to be related.

 

[MeSci]

I hope you haven't been upset by any postings, @annedav. Please stick around. I'd hate to think that someone had found us after being disbelieved and accused everywhere else, and spending vast sums of money on ineffective and harmful treatments, only to feel unwelcome after coming to the right place.

Most of us really do want to help, but there is a certain prickliness which comes from being told by many other people that we can recover after trying dangerous quackery. I don't think you are doing this at all - you have made it clear that the apparent improvements were only brief.

Sadly, mind over matter can seem to work temporarily - up to a year or more in some cases, it seems, hence the endless stories in the media about miracles happening after trying unscientific treatments, which make some people very sensitive to anything that might seem to suggest this.

 

[Gingergrrl]

Sadly, mind over matter can seem to work temporarily - up to a year or more in some cases, it seems, hence the endless stories in the media about miracles happening after trying unscientific treatments, which make some people very sensitive to anything that might seem to suggest this.

I am not sure what the post about model had to do with this thread and am more confused at the moment (what else is new?!)

What I was reacting to (this is not aimed at @MeSci and is just a general comment) is someone posting that they went from bedbound to walking miles a day no longer requiring a wheelchair after two weeks of "Mickel therapy." I find this very troubling in case anyone else decides to copy it. It would be very dangerous whether the individual had ME/CFS or POTS and not recommended in either case. I know some of the UK charities endorse extreme physical fitness events but I have always jumped into those threads as well to express my concern.

IMO, "Mind over matter" does not work for ME/CFS and is the fallacy behind CBT and GET and lightning process and Mickel therapy, etc, etc. I know there are endless media stories endorsing them, but it will never make them true. It would not matter if my family and best friends came to my house and told me I'd won the lottery and was offered a paid vacation to Hawaii- I would be not be able to go. The trip to see my ME/CFS specialist takes me several weeks to recover from.

I cannot lift my arms above my head, I cannot lift anything from the floor, I cannot carry things including my own lightweight purse, or pack a suitcase, I cannot breathe if I walk more than a few feet. When I do, I get so short of breath that if I continue to push it (which I often do) I get chest pain and a microvascular angina spasm due to not enough blood volume to perfuse the small vessels of my heart. If I continued even further, I would collapse and end up in the ER.

I don't see how someone with ME/CFS could use any "mind over matter" technique and then be recovered for a year. I do, however, believe that people have gotten significantly better from treatments whether it is antibiotics for Lyme, anti-virals for viral infections, finding the right autonomic meds and treatments for POTS, NMH, OI, etc. I do believe that healing is possible and am not trying to be negative even though healing has not yet happened for me.

I just think we need to be careful what we endorse and promote here, that is just my opinion. And again I am in no way anti-therapy or even anti CBT when it is used as a proper coping tool. I just don't see that in this thread.

 

[justy]

I have to agree with @Me Sci that sometimes people with M.E do seem to recover partially when pushing themselves on the lightning process etc, but many of these people do crash further afterwards, and some very badly.

We all have different levels of illness and different co morbidities. For someone with M.E but without POTS, we can sometimes push ourselves as we don't have the POTS to deal with as well. If I had POTS as well then it would of course be impossible physically for me to push myself like that.

Im sure not everyone could do this, and no one SHOULD do it - but some people with M.E probabaly CAN briefly.

 

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

I have to agree with @Me Sci that sometimes people with M.E do seem to recover partially when pushing themselves on the lightning process etc, but many of these people do crash further afterwards, and some very badly.

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.

 

[MeSci]

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.

and can you or she be sure that she had/has ME?

EDIT -

I just misread part of your sig - thought it said "anything you do say will be mosquitoed..."

Whatever that is.

 

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

and can you or she be sure that she had/has ME?

I was trying not to say that out loud as i hate it when mildly affected peeps are often judged as not having ME... But IMO she never fit the description of ME as far as i could see OR she was just very mildly affected. The fact that LP helped so much also sways me towards non ME opinion... But who can say

PS. Ive never mosquitoed anyone in my life i'll have you know lol

 

[MeSci]

PS. Ive never mosquitoed anyone in my life i'll have you know lol

How do you know?

 

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

Lol

 

[Raines]

My daughter came home for two weeks at xmas the year before this one and I was out and about in my wheelchair everyday with no rests and I was so much better. In fact I nearly recovered there as well but as soon as she left I was ill again.

I feel better when my sister visits, its like the stress and worry in my mind melts away and I feel a little better. She is the only person who treats me normally while not ignoring my illness. (I hope that sentence makes sense).
And while I don't manage to do anything more than I normally can, I do feel better in myself.

There may be many reasons while you may feel better when your daughter visits, someone who loves and supports you, less time to stress and worry, someone to help you out.

@annedav you are ill and you deserve understanding and kindness, from yourself as well as others.

 

[Mij]

@Raines I also feel better when my sister comes to visit every year, she doesn't judge and just 'goes with it'. It's definitely the endorphins though because I do start to feel strained at the 2 week mark.

I was seeing a wonderful functional medicine doctor before he retired and I always left his office feeling kind of 'high' because he was so understanding and tried everything to help me.

 

[Gingergrrl]

I was only trying to say that there is a vast difference between feeling emotionally better and supported b/c a loved one visits and getting out of a wheelchair and walking miles b/c a loved one visits.

If someone can do that, they have a different illness than I do. Which is certainly okay and people on here have different illnesses and I was not blaming anyone. I would kill to not have to use the wheelchair even for one hour. I can walk for only a few minutes at a time and even for that I pay the price dearly.

I stand by my point that if Mickel therapy or lightning process or a visit from a loved one can lead to getting out of a wheelchair and literally walking for miles, we are talking about different illnesses.

 

[Hip]

I've paid a small fortune and none of it has helped. In fact I developed a phobia to m.e thoughts and still can't get it out of my head that thoughts about m.e are causing the m.e. and if only I could stop thinking, I would recover. I am in such a stressed out state about it all and get such bad anxiety every time an m.e pops up, its just making me feel so ill.

That sounds a bit like brainwashing.

Of course, there's nothing wrong with positive thinking, and all the books I have ever read on the subject of positive thinking advise that you should focus your mind on the outcome you want, and picture yourself, in your own mind, in the way you want to become. And I think this is good advice.

However, at the same time, we don't want to become blind to the obstacles we face.

Along the road to better health are certain obstacles, and in our case, these obstacles are the various ME/CFS symptoms that you have to tackle and try to ameliorate in order to obtain better health. Such symptoms include fatigue, brain fog, sound sensitivity, anxiety, post-exertional malaise, etc. Many of these individual symptoms can be ameliorated with the right treatments.

So for anyone to advise you that you need to ignore ME/CFS symptoms is like advising a driver that they should not pay any attention to the obstacles (pedestrians, etc) in the road. Ignoring the obstacles in your way is a recipe for disaster.

Oh and Justy I forgot to add I have candida and leaky gut and I know that can cause anxiety so that won't be helping me. X

If you have anxiety symptoms, this thread might be of interest. The treatments listed in that thread have worked for many ME/CFS patients on this forum with anxiety symptoms.

Is anxiety is significant symptom for you?

I'm still struggling with it not being all in my head although I do want to believe you all so much. The trouble is I find it so hard to believe as I went from bed bound to walking miles each day within two weeks of mickel therapy. The therapist came to my home and I could barely get downstairs. She told me this was all about childhood trauma and I had PTSD. I felt like a massive load was taken off my shoulders and the difference was amazing. I painted the whole of the front of my house and went on holiday walking in the Peak District. I wasn't worried about m.e anymore. But then I suffered some stress in my life and went slowly downhill again much to the frustration of the therapist.

I wonder if it was not so much the specifics of the Mickel Therapy that helped you, but rather the fact that you believed it would help, and thus this took a lot of burden off your mind, and thereby lowered your stress levels. It seems as if your health is very sensitive to stress, so perhaps lowered stress levels may have lead to an improvement in your ME/CFS.

If so, then you might want to focus on finding ways to reduce stress.

P.s. She also said that my head being wired with non stop thoughts and flashing lights when I close my eyes has nothing at all to do with m.e and I need more time with the physchologist.

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.

The supplement choline bitartrate can calm racing thoughts.

 

[MeSci]

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.

The supplement choline bitartrate can calm racing thoughts.

Anxiety is very common in ME. I believe that it has the same cause(s) as ME itself. In my case this appears to be gut dysbiosis, so that a leaky-gut diet and supplements has finally reduced it dramatically - it's almost absent now. I rarely get the racing, intrusive thoughts or the unwanted, unpredictable 'adrenaline rushes' now, which is wonderful. I had taken so many drugs and drunk so much alcohol over my life to try to calm my anxiety. I had self-harmed. I had had it for so long (since childhood - and I am now 61), and had concluded that it was just a personality trait, and come to accept it - to not 'fear the fear'. But now the fear is gone!

 

[MeSci]

I was only trying to say that there is a vast difference between feeling emotionally better and supported b/c a loved one visits and getting out of a wheelchair and walking miles b/c a loved one visits.

If someone can do that, they have a different illness than I do. Which is certainly okay and people on here have different illnesses and I was not blaming anyone. I would kill to not have to use the wheelchair even for one hour. I can walk for only a few minutes at a time and even for that I pay the price dearly.

I stand by my point that if Mickel therapy or lightning process or a visit from a loved one can lead to getting out of a wheelchair and literally walking for miles, we are talking about different illnesses.

As ME is so poorly defined, there is almost-certainly a number of different types. You appear to be very severely affected, so you won't be able to do what less-severely affected people might be able to do.

And as I said, @annedav could have had a spontaneous temporary remission which happened to coincide with the Mickel therapy.

 

[Raines]

@Raines I also feel better when my sister comes to visit every year, she doesn't judge and just 'goes with it'. It's definitely the endorphins though because I do start to feel strained at the 2 week mark.

Yes! there is a point when the commotion of her staying out balances the happiness.

I stand by my point that if Mickel therapy or lightning process or a visit from a loved one can lead to getting out of a wheelchair and literally walking for miles, we are talking about different illnesses.

I agree with you Gingergrrl
We all know that CFS is a waste basket diagnosis, I think that is one of the problems, some people may find these therapys help them, but it just proves (to me at least) that they have/had is something else. That dosen't mean they weren't ill, it just means its not my fault when what works for someone else doesn't work for me.

 

[justy]

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.

Anxiety AND racing thoughts in my opinion could form part of a constellation of symptoms that a person with M.E has, for a number of reasons. Many PWME are fighting against a medical establishment, friends, culture and family who are deeply suspicious of their illness. Many PWME are abused by professionals who do not take them seriously and denigrate their condition. This can cause massive amounts of anxiety. Other causes of anxiety could be a dysregulated hormonal, autonomic or brain system. Many PWME have bacterial infections such as Lyme disease or Bartonella which can also cause horrendous psychiatric problems.

M.E is a complex illness and may contain different presentations and co morbidities.

 

[justy]

Gingergrrl said: ↑
I stand by my point that if Mickel therapy or lightning process or a visit from a loved one can lead to getting out of a wheelchair and literally walking for miles, we are talking about different illnesses

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.