All my fault?

[MeSci]

No I've had the tests orthostatic hypotension with professor Julia Newton who specialises in this and I don't have it.
No it didn't start with a virus. It started after a lot of stress. No sinus problems but chronic migraines for years. No blocked nose or environmental issues.
My symptoms are more neurological with a wired feeling all the time, can't sleep, can't stop thinking, anxiety, migraines as I said, ibs, very weak eyes - can't watch tv or read and typing this is killing me and I can't walk much at all.
I'm working with a nutritionist and I have candida and leaky gut also borderline adrenal fatigue. Not sure about parasites but will ask her.
I think the worst symptom is the weak eyes. I'm so limited so must stop now. Thanks

Julia Newton seems to really know what she is doing. She has done research on our muscles, exertion and mitochondria, which is discussed a lot on this site.

There is also a lot of info here about leaky gut treatments. I am one of those who has benefited enormously from a gut-healing diet. You will find a lot of info here free. I don't know if you are paying to see the nutritionist, and don't know whether you are seeing a good one. A lot of nutritionists and dieticians just follow official advice, which is not good.

But I think you would be lucky to get a sustained increase in energy in the short term. That is the one thing that eludes many of us.

We often have to make do with just feeling better, but still with a limited capacity to do physical stuff.

 

[annedav]

Julia Newton seems to really know what she is doing. She has done research on our muscles, exertion and mitochondria, which is discussed a lot on this site.

There is also a lot of info here about leaky gut treatments. I am one of those who has benefited enormously from a gut-healing diet. You will find a lot of info here free. I don't know if you are paying to see the nutritionist, and don't know whether you are seeing a good one. A lot of nutritionists and dieticians just follow official advice, which is not good.

But I think you would be lucky to get a sustained increase in energy in the short term. That is the one thing that eludes many of us.

We often have to make do with just feeling better, but still with a limited capacity to do physical stuff.

Thanks I'll check out leaky gut info.

Julia is my consultant. To be honest I don't really rate her. She's not interested in mitachondria. All she does is tell me to walk further and my body will get used to it.
further and my body will get used to it. The latest letter she sent to my GP said Anne continues to focus on symptoms which couldn't be further from the truth considering all I've done for two years is not think about them! I think she might be more interested if I had Pots.
I'm working with OHC nutritionist who practices functional medicine specialising in m.e of course. She has done most of tests like dr myhill and is treating my leaky gut and candida etc. it's very expensive £125 for 40 mins consultation.

 

[Roy S]

@annedav
I'm sorry you've been put through this and at such great expense. Most of us have had at least some of the same type of harmful experiences.

When you were diagnosed with MS did you get told the same things?

 

[MeSci]

Thanks I'll check out leaky gut info.

Julia is my consultant. To be honest I don't really rate her. She's not interested in mitachondria. All she does is tell me to walk further and my body will get used to it.
further and my body will get used to it. The latest letter she sent to my GP said Anne continues to focus on symptoms which couldn't be further from the truth considering all I've done for two years is not think about them! I think she might be more interested if I had Pots.

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

 

[annedav]

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

Absolutely. She told me supplements don't make any difference to m.e and dr myhill has never published any papers to prove her theory. The cresta clinic in newcastle which I am a patient consists of a physchologist, an OT and a physio. Their protocol is graded exercise and CBT. The physio is very good and teaches Pilates but the OT just says do more, walk further etc. Julia reviews me once every three months but as I say she sent a copy of letter to my GP from my last review saying "Anne continues to make slow progress but still continues to focus on symptoms". I was so offended particularly as I've said on here I've done everything I can not to focus on symptoms. I was making very slow progress going from attending cresta in a wheelchair to driving myself and walking in but my anxiety/stress was so bad(about the thoughts) the physchologist told me to do more, walk further, get a hobby so I wouldn't be worrying. I walked further and crashed three weeks before Xmas and can barely leave house now.

 

[annedav]

Absolutely. She told me supplements don't make any difference to m.e and dr myhill has never published any papers to prove her theory. The cresta clinic in newcastle which I am a patient consists of a physchologist, an OT and a physio. Their protocol is graded exercise and CBT. The physio is very good and teaches Pilates but the OT just says do more, walk further etc. Julia reviews me once every three months but as I say she sent a copy of letter to my GP from my last review saying "Anne continues to make slow progress but still continues to focus on symptoms". I was so offended particularly as I've said on here I've done everything I can not to focus on symptoms. I was making very slow progress going from attending cresta in a wheelchair to driving myself and walking in but my anxiety/stress was so bad(about the thoughts) the physchologist told me to do more, walk further, get a hobby so I wouldn't be worrying. I walked further and crashed three weeks before Xmas and can barely leave house now.

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.

Absolutely. She told me supplements don't make any difference to m.e and dr myhill has never published any papers to prove her theory. The cresta clinic in newcastle which I am a patient consists of a physchologist, an OT and a physio. Their protocol is graded exercise and CBT. The physio is very good and teaches Pilates but the OT just says do more, walk further etc. Julia reviews me once every three months but as I say she sent a copy of letter to my GP from my last review saying "Anne continues to make slow progress but still continues to focus on symptoms". I was so offended particularly as I've said on here I've done everything I can not to focus on symptoms. I was making very slow progress going from attending cresta in a wheelchair to driving myself and walking in but my anxiety/stress was so bad(about the thoughts) the physchologist told me to do more, walk further, get a hobby so I wouldn't be worrying. I walked further and crashed three weeks before Xmas and can barely leave house now.

 

[MeSci]

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.

Do you mind if I direct people here from other threads where Dr Newton's work is referred to? I think they will be as shocked as I am.

 

[annedav]

Do you mind if I direct people here from other threads where Dr Newton's work is referred to? I think they will be as shocked as I am.

Course you can. I don't mean to be nasty about her. In fact she's a lovely woman. Very warm and friendly. Everyone just calls her Julia. But they are the facts she told me.

 

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

@annedav i'm so sorry to hear about all you've been through. I only found your thread because of a link mesci posted in another thread. Thanks! @MeSci otherwise i wouldnt have seen it.

I'm also a patient of Julia's. Next app in March. Before i saw her, i had the misfortune to deal with two other doctors in her department. I have a blog post about it on here but too brain dead to link it. During the 2 hour interrogation i told them where to stick their idiot ideas of CBT, deconditioning and stress etc. and spent a long time explaining the reasons to them why CBT doesnt work etc. i was nearly dead when i got out of there.

Julia has since diagnosed me with POTS and told me exactly the same thing about Dr. Myhill's testing and supps. Maybe she gets asked this a lot.

Its now in my report that i have POTS.. But i have a horrible feeling that my GP will now think this is 'instead of' ME. So i need to make sure this isnt the case as i dont have the strength to deal with that one!

She never discussed the ME with me; only the POTS which was a bit disappointing as i always thought she covered both to an extent, which makes me think i wont get any advice about it at all.

On the plus side, no mention of a CFS clinic was mentioned (at least by her) nor any mention of needing to do any exercise, graded or other (even for the POTS) and that deconditioning or stress didn't cause it (which the previous interogators slyly tried to pin on me) and she mentioned some studies that she's currently trying to get the green light for.

I was offered to try various drugs for the POTS if i wish but was told that its possible non will really help much.

Hearing of your experience has definitely worried me somewhat! I'll be more aware when i see her next and take this into account when discussing things. My experience with her was very positive; though after the abuse i got during the previous visit in that same department i was fully prepared for battle 'operation ME defense' so was elated when i was treat like a normal human being by her.

I'd love to hear how you get on in future and if anything useful or useable is gained from the visits.

 

[WillowJ]

She told me supplements don't make any difference to m.e and dr myhill has never published any papers to prove her theory.

Dr Myhill has published some papers (I lost track), but her work on the test for mitochondrial dysfunction hasn't been replicated by others, as far as I am aware.
http://www.ncbi.nlm.nih.gov/pubmed/?term=myhill s

However a number of papers posit mitochondrial dysfunction using a variety of other tests.
http://www.ncbi.nlm.nih.gov/pubmed/?term="chronic fatigue syndrome" mitochondria
http://www.ncbi.nlm.nih.gov/pubmed/?term="chronic fatigue syndrome" "oxidative stress"

I am sorry that you have had so many difficult experiences, and that you are doing not well now.

@Jonathan Edwards may like to see this page.

It's pretty usual for us to be told this kind of problematic thing, but seems very hard when it comes over time in the course of a presumably therapeutic relationship. I was just talking to someone else today who told me their therapist essentially blamed them for their illness also, and this caused them to do too much and relapse physically, as well as causing emotional hurt.

Hang in there.

I always find it encouraging to listen to Dr. Montoya.
http://med.stanford.edu/chronicfatiguesyndrome/

 

[taniaaust1]

Do you mind if I direct people here from other threads where Dr Newton's work is referred to? I think they will be as shocked as I am.

Wasnt it Julia Newton who found that was it about 95% or 98% of us have autonomic dysfunction of some kind which can be found on testing. In this light it is understandable that she would very much doubt that someone who isnt showing this, has got ME/CFS.

She's probably very confused why someone who is severe enough to need a wheelchair doesnt show any of the dysfunction she thinks is universal in us.

I walked further and crashed three weeks before Xmas and can barely leave house now.

That does sound like typical ME/CFS .. it did thou sound strange that you were suddenly were good when your daughter was there (unless your daughter was doing the daily house tasks for you which may of enabled you not to have to exert so much).

It also sounded weird that you were able to go from wheelchair to long walks in only 2 weeks due to a psychological treatment, that would make most of us here very sick increasing our activity like that. That doesnt sound like ME.

If I was a ME/CFS specialist, I'd be confused by your case. No matter what the issue is, I do think its very unfair thou that they are blaming you for not being well. Too many doctors love doing that as they dont like to believe their treatments have failed the patient.

I dont know if you have ME or not but whatever is wrong, it isnt your fault!.

 

[Gingergrrl]

Wasnt it Julia Newton who found that was it about 95% or 98% of us have autonomic dysfunction of some kind which can be found on testing. In this light it is understandable that she would very much doubt that someone who isnt showing this, has got ME/CFS.

I am not sure if it was Julia Newton (I know little about her) or if it was other doctors who discovered this but my understanding is that autonomic dysfunction is a very core part of ME/CFS in most sufferers. It has by far been the worst group of symptoms for me.

She's probably very confused why someone who is severe enough to need a wheelchair doesnt show any of the dysfunction she thinks is universal in us.

I can only speak for myself but I use the wheelchair b/c if I walk more than a few feet, I get severe shortness of breath and my BP drops and if I don't stop I will get chest pain and angina type spasms. It is literally impossible to continue and if I did, I would end up in the ER. I can control the tachycardia/POTS with a beta blocker but nothing helps the rest of the symptoms.

it did thou sound strange that you were suddenly were good when your daughter was there (unless your daughter was doing the daily house tasks for you which may of enabled you not to have to exert so much). It also sounded weird that you were able to go from wheelchair to long walks in only 2 weeks due to a psychological treatment, that would make most of us here very sick increasing our activity like that.

I did not read the whole thread but IMO no one with ME/CFS would be able to go from a wheelchair to taking long walks in two weeks due to only a psychological treatment. That is the core fallacy behind CBT and GET and psychological treatments do not cure autonomic dysfunction or ME/CFS. And I am speaking as a professional who works in this field (until I became ill) and am not anti-psychology in any way.

If I was a ME/CFS specialist, I'd be confused by your case.

I would be too if I am understanding what I read correctly (which may not be the case.)

 

[MeSci]

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.

And @annedav is seeing a CFS/ME specialist.

 

[lookinglass]

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?

 

[ukxmrv]

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?

this comment was interesting I think. Maybe more to this story.

Cordelia, Kent, 11 months ago
Yet in April 2011 you ran an article on Ella, her university degree, her signing with Models 1 and the fact that her parents are worth £40 million. The accompanying lingerie shots definitely do NOT indicate someone who lives on the all-sugar diet she has recalled from these days. The toned limbs and flat stomach would suggest the opposite, so I am taking this story with a shedload of salt. I agree with previous posters that Ella's website and recipes look fantastic, as does she.


Read more: http://www.dailymail.co.uk/femail/a...cipe-app-number-one-iTunes.html#ixzz3Q7rhQZ9l
Follow us: @MailOnline on Twitter | DailyMail on Facebook

 

[MeSci]

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 point in me saying I have it, as I don't, and it could presumably be ruled out easily.

Only a proportion of us have it - see this thread.

 

[lookinglass]

There is a much more comprehensive article in the Saturday Daily telegraph last weekend. The media love her . The story is genuine. She was a model before the illness and one of the enviable ones who were always skinny no matter what they ate. Unfortunately the Telegraph is subscription only .......can't paste it over.

 

[MeSci]

The accompanying lingerie shots definitely do NOT indicate someone who lives on the all-sugar diet she has recalled from these days. The toned limbs and flat stomach would suggest the opposite, so I am taking this story with a shedload of salt.

There was a time when I was slim and ate a lot of junk. It is possible.

 

[lookinglass]

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.

 

[ukxmrv]

There was a time when I was slim and ate a lot of junk. It is possible.

and toned and modelling?

and the timing. 2011 last article in the paper modelling and then claiming to be bedbound (or at least disgnosed) since 2011?

If she was bedbound how did she manage to chop or cook and do the smoothies.

I think that there is more to this story. Did she ever have a POTS test or any other tests?