Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

[Cheesus]

I am scratching my beard over this one. We Buddhists have what you call 'dependent arising'. This is the concept that nothing arises entirely independently. The imagery of a bed of reeds is given, where shifting one reed will move others. Perhaps playing cards uniformly sprawled in an overlapping pattern gives a similar idea. Start to flip one and the others will flip too. Differentiating cause and effect in circumstances where effect can subsequently feed into cause becomes very difficult. Again, for treatment interventions it would not always be necessary, or possible, to untangle this web.

 

[Cheesus]

Yes, it is a reasonable theory when applied in sensible manner. Psychological and social factors do have an impact on ME, even in the perpetuation of it - but not in the manner which the psychobabblers like to claim. Psychological harm is almost invariably done to ME patients by their approach and the bad attitude which has been passed onto the public and media, and the sociopolitical factors certainly have a huge influence on the lack of treatment and failure to reduce levels of disability.

So I would agree 100% that psychological and social factors are involved in ME and many (most? all?) other diseases. I would also say that the disease itself is 100% biological

I just read this properly. I didn't realise you were referring just to ME, I read that you were referring to ALL disease. Yes undeniably ME is 100% biological. Still, I am personally aiming to treat it using biological, social and psychological interventions. Each element can affect the others.

ETA: You know, I don't think I have EVER so wholeheartedly agreed with you, Valentijn.

 

[taniaaust1]

Is it? IMO too many surveys/measures rely on people saying whether or not they feel better, worse, etc. Surely the most important thing is whether she has any functional improvements and any improvements in physiological parameters.

I'm glad she feels better, of course, but as a patient group we need much more than that.

Obviously she has had functioning improvement if she couldnt walk before yet now can.

I see only one other ME charity has covered this story aside from the ME Association.
Why hasn't 25% Group? Or IiME? Not even a mention. Are they that entrenched that they wont post something because it contains a contribution from a 'competitor' or is it more to do with not doing stories that show someone who has ME making progress?
How sad.

@Firestormm

There is an issue out there with people if a severe ME person is in recovery or recovering.. or even worst in full remission!! I got given crap, many many years ago when I had involvement with the Hummingbirds ME/CFS people (a very ill lot) as I ended up recovered over years after being completely bedbound with very severe ME (I had been one of the ME horror stories we rarely hear about). I had many people then dejecting that could of ever had ME (I think I was even blocked/kicked from that group for sharing how I'd recovered from very severe bedbound ME).

Unfortunately we seem to carry the risk of getting ME back , hit by virus which is going around and you may well find yourself back in this horror again.

I kind of have my heart in my mouth when I read of stories of severe ones like this thread, making great improvement as there is something even worst then getting ME in the first place, that is getting it back again esp if you were extremely severe and bedbound before and know what all this means. She is so happy to be improving but that could be pulled away from her at any time.

 

[MeSci]

Have you read my blog on this? http://forums.phoenixrising.me/index.php?entries/the-doggy-treat-model-of-why-it-is-so.830/

Haven't but would love to get round to it when I have time!

 

[alex3619]

If you break a bone there are psychological and social interactions that affect the recovery experience. Yet the recovery is essentially biological, as is the damage. The underlying notion of BPS is sound, but from its very inception it has been used to justify psychosomatic causation in a world in which psychosomatic medicine was becoming increasingly unpopular and untenable. This goes right past Engels and into the early writers on this in the 30s and 50s.

So far I do not think any real disease is psychosomatic. Not one. I do think thought disorders exist though, including those derived from brainwashing, whether this is from serious brainwashing in re-education camps, or systemic brainwashing from aggressive public relations. Yet such thought disorders do not directly cause disease, though they might lead to behaviours that increase disease risk.

No claim that any particular illness is psychosomatic has ever been substantiated. My challenge is still out there. If any have been substantiated, then please cite the paper. If so many papers have done this then it should be easy. I doubt it can be done though. I think what I may get is stuff that is very poor science, referencing yet more poor science. Indeed I suspect much of it is nonscience and pseudoscience.

Yet nobody doubts that therapy and attitude can substantially modify someone's experience of recovery. Recovery can be a slow horrible thing or a much easier experience. There is a role for therapy of all sorts in this. There is not however a role for all theories.

 

[taniaaust1]

Thank you for posting the link to her facebook page, @Firestormm . It's extremely disturbing. Aside from the positive aspect that she's getting appropriate support, the rest shows pretty creepy CBT influences.

A huge focus on "fighting" the disease, and in a couple posts from the last month or two she confesses that she doesn't talk about any worsening or negative symptoms usually to keep a positive appearance. Her pain is mentioned, in the context of getting worse (unbearable) due to them cutting her back on drugs and the increased activity. Her doctor seems to think that the increased pain is part of progress and she has also adopted that attitude.

OH NO that is scary, It sounds to me that she's really had a lucky break but probably will end up right back to where she started due to what they are doing!!

Has her facebook got an email address so I can contact her, I came back from a full bedbound severe state to full remission and it certainly wasnt by what her doctors seem to be doing. After being bedbound long term I got lucky as something shifted to put my ME on the path to improve and from there aggressive resting and pacing my activities, only doing enough so not to cause any downfalls lead to further and further improvement.

Putting pressure onto her body by pain will surely cause stress for her body and herself even if she is working hard to stay postive with pain. (Im sure she is working very hard mentally, emotionally to keep from letting the pain be affecting her positive attitude due to she's improved).

OMG she's going to fall, she'll only get more and more pain with activity and she'll feel emotionally destroyed if she ends of loosing all the gains she had and will then have less will to deal with the whole illness. (this story is now near unbearable for me to read. I want to email her and tell her to listen to her body and what its saying to her).

And even though much of the improvement in her life is due to the additional support, it's already looking like people want to credit the magical healing of CBT and GET.

Sighs additional support often helps ME people some and can help turn the illness around.

 

[MeSci]

There is a school of thought that is promoting the BioPSYCHOsocial concept of disease, how it relates to diseases like ME, and in disability in general.

Oh - I thought it was the British Psychological Society!

 

[taniaaust1]

Listed under medicinal treatments is 'Bungee jumping'.

OMG, if I did something like that I'd be sick with excessive adrenaline for many hours, it almost gives me an adreanline rush thinking about it.

Some parts from that

Introduction





In this paper I will be discussing how a simple symptom of fatigue has become the centre of a huge
medical and sociological argument. The heated debate in the medical world has sadly set doctor against
doctor, patient against doctor, and even society against patient! Somewhere in the middle of all this, the
patient suffers. Some say Chronic Fatigue Syndrome is all in the mind and these patients need to just
get on with life. Others say it as an organic illness and refuse to countenance any thought of
psychological factors as part of the cause of the illness.

umm simple symptom of fatigue????

To cap it all because CFS/ME has a profound effect on cognition then communication was even more
problematic between patient and physician. Often such obviously intelligent people were behaving as if
they could not follow simple instructions or basic logical argument.

Yes, it was definitely “in the mind” especially when stress was often seen to be one of the triggers, or predisposing factors, in the illness

Umm "behaving" .. "in the mind".

I cant stand to finish reading just page 5 of it.

Is he now going to blame this poor girl for just being afraid rather than ill?

Obviously they will when she looses all that very lucky gain she's made. Blame her and dismiss her and leave her wallowing in her then extreme sorrow over her relapse.

What's the bet she hasnt read all this, she should be send that link (that is the place where she's at isnt it?).

 

[MeSci]

What is this bouncing around you are talking about? My daughter, my uncle, and I have all made steady progress under the care of top ME/CFS clinicians.

I think maybe the simple answer is UK vs US. Is @cmt12 in the UK?

ME sufferers in the UK do get bounced around, AND there are no, or very few, real specialists. I have seen a urologist for my polyuria on the assumption that it was bladder- or kidney-related, an endocrinologist (again for the polyuria, and he didn't understand it despite being a top UK endo) and had an interview with ME immunologist Prof Pinching, who basically just said that I was managing it very well, understood it well and was doing the right things.

Others are sent to neurologists, psychologists, gynaecologists (for the common co-morbidity PCOS), etc. No doctor in the UK that I have seen has 'got' the fact that all these things are ME-related and probably have common causation.

EDIT - except Prof Pinching, although even he baulked at 'believing' in chemical sensitivity.

 

[Wildcat]

.
.

Really, in Britain, the idea that 'psychological factors' have an impact on ME (recovery or perpetuation) is like building a residential housing estate, neglecting to install plumbing, gas, electricity, sewage services, but expecting the residents' quality of life to be really enhanced by the lovely interior decor and landscape gardening.....

........and then spending 25 years doing studies which all conclude that the landscape gardening and interior decor are the most important factors affecting quality of life on that housing estate!
.

 

[taniaaust1]

This is why I'd like to know what her treatment consists of. If it is primarily CBT/GET that is helping her, doesn't that tell us that what she has isn't strictly CFS/ME??

No as those with ME can have sudden improvements anyway without any of those things. I did.

I personally this she just got lucky, thing is she will end up loosing her gains if they push her with GET (if she does have ME).

 

[xchocoholic]

Does anyone know if she or her family know how to do a poor man's tilt table test ? Are they tracking her hr and bp supine, standing and sitting ? This info could be helpful for her if it shows OI or other irregularities.

If we look at Christopher Reeves example, she could have brain or spinal cord damage causing her weakness too. Although, I had ataxia and white lesions on my brain and was never too weak to stand up or walk for short periods most days. I just felt horrible and had to specifically tell my legs to move if I went more than about 200 feet. My vision went wonky everytime too. OI is causing petite mals and sob nowadays when upright.

It's shocking that the UK medical profession is so behind on diagnosing me/cfs.

Tc .. x

 

[Mij]

Does anyone know if she or her family know how to do a poor man's tilt table test ? Are they tracking her hr and bp supine, standing and sitting ? This info could be helpful for her if it shows OI or other irregularities.

If we look at Christopher Reeves example, she could have brain or spinal cord damage causing her weakness too. Although, I had ataxia and white lesions on my brain and was too weak to stand up or walk. I just felt horrible and had to specifically tell my legs to move. My vision went wonky everytime too. OI is causing petite mals and sob nowadays when upright.

It's shocking that the UK medical profession is so behind on diagnosing me/cfs.

Tc .. x

I read on her facebook page that she takes meds for seizures.

 

[taniaaust1]

She's wearing a harness, holding onto a walker, and two people have their hands on her back and shoulders to keep her from toppling over. In the larger image she looks both ecstatic and about to collapse from exhaustion.

Winching someone out of bed and propping them up for a few seconds seems like a rather poor indication of progress. Of course, I certainly hope that physical improvement is possible, but I see no reliable indication of it in the current situation.

I think that is huge progress if she previously was completely bedbound and couldnt even be raised up. Maybe she previously went into too much shaking or something to do that before.

I have times even now when I couldnt even be raised in that manner, so I can understand how over joyed someone who never could before be raised up for years, would be to make that improvement which I know to most doesnt sound a lot but to someone who couldnt even have that done before, it is a lot.

I guess her therapists are all excited about this as they probably think they can work with her now like they would any other person they are rehabilitating from other illnesses, thing is that isnt necessarily at all so the case.

One thing Im sure of being bad for so long and not being in that position for a long time, she'd have some quite major OI going on (just like astronaunts get). dont they need therapy for them to get over that? So possibly she could improve further by just keeping her upright for a short time each day (even if its by dangling her and she not using muscles) and extending this till she gets to the point she hasnt got OI from being bedridden (thou there is every chance she will have OI anyway).

 

[MeSci]

There is a big difference between what is called CBT in the UK and what we know as CBT in the US. I don't think anyone is denying that CBT that teaches a person to deal emotionally with chronic illness can help some patients cope with the illness. It does not change the physical condition of the patient. It is certainly not a cure.

The reason CBT is frowned on here at PR is because in the UK (and the Netherlands also?) what is called CBT is telling patients to deny their symptoms and continue to increase activity despite how they feel or what it is doing to their physical condition. It is based on the premise that there is no organic illness and that all symptoms are caused by "false illness beliefs". They also claim that it is the only "proven" treatment for ME/CFS and that patients recover with its use. THAT is what most of us here are objecting to, not learning emotional coping skills.

I think that it's just the specific type of CBT used in conjunction with GET that is the problem in the UK. As you say, it is designed to convince patients to ignore their symptoms - to 'break the link' between exercise and symptom perception. This makes me very angry, as it takes a long time and a lot of hard work, trial and error, for patients to learn the link and use it for essential pacing strategies. To then force them to unlearn it is criminal.

 

[MeSci]

I havent read the article but about to read it, I saw your comment first. I assume she's in the same kind of boat so will comment on it

When Im very sick, Im too sick to even sit up for long if at all, let alone use a wheelchair (to be pushed places). Most with severe ME have orthostatic intollerence at least to a degree, so this often means they cant even sit up for long. I overcome some how long I can be in a wheelchair for as Ive a very special wheelchair in which has raised legs (Im unable to push myself far at all thou in it). The electric ones Ive seen, dont have raised leg options.

There is also the issue with being in a wheelchair, I can fall out of it, on my very bad days, due to effort involved in sitting up, means I will be slumped over, I can be having trouble holding my head up (my wheelchair dont have straps). If I have ME spasm or a ME near seizure or if Im starting to loose consicousness due to orthostatic intollerance, I could easily fall out the chair!

I had some nurses one time have to actually hold me into the chair to stop me from falling out of it, get me out of hospital toilet room after I'd collapsed there (after having to wait too long in the waiting room to see doctor).

To strap someone with ME who gets orthostatic intollerance into a wheelchair would be highly dangerous and can lead to an unconscious person being strapped upright with their brains being starved of blood and oxygen.

Another issue I get why I cant be put into a wheelchair on my worser times, is the movement of being pushed in the chair. That can be way overstimulating for my head and cause me to go into violent jerking and basically cause what looks like a seizure. When I bad, I cant cope with things passing quickly by which happens when being pushed in chair.

Most of those who have very severe ME are unable to use wheelchairs.

That's why she is trying to get a fully-reclining wheelchair. I think someone is crowdfunding to buy her one as the NHS won't give her one (I think I saw it on her Facebook page). Just did internet search for 'reclining wheelchair' and found them on ebay for under £400, i.e 100 times cheaper than the estimated treatment at that clinic, which the NHS DID fund!

 

[taniaaust1]

The posts on this thread are the reasons why I stopped coming on here. Why make her story into this?! A 24 year old female with CFS/ME says she has been bedbound for 9 years! She is walking for the first time since being SEVERELY ill! And the first thing people do is question whether she has CFS or not. Why can't you just be happy? Why question authenticity whenever you read a story about recovery. If you see someone suffering as much as you have, maybe worse, you should be content, proud and inspired. But a lot of you have turned this into something it is not which is sad. CFS is not her name. Neither is hydrotherapy or physiotherapy. Her name is jess. A 24 year old female who has suffered for way too long but is improving finally. Just be happy for once and please don't slander her name which a few people on this thread are indirectly doing.

I'm sorry if this came across as rude but people need to remember the bases of this story and not get side-tracked. She is making her life better. Something we should all aspire to. The reactions on here have made my really sad. Just be happy for once.

It's human to wonder if the other has the same illness as oneself or not and be trying to figure out.

To me from the things said, I personally believe she has ME (not cause she was bedbound for ages as other illnesses can do that too) but from the other symptoms which have been mentioned coming from her FB posts people have posted.

What is not good is if someone goes and says she couldnt have had ME due to getting better. That's simply untrue that ME patients cant improve especially if they are getting more support!

You will always get ME people thou wondering if someone recovering was a ME case or a CFS one and shouldnt expect ME people not to wonder that when we are on a mixed ME and CFS website and the big world out there mixes these two things.

Some people wondering, doesnt imply at all these people arent happy that a very sick person improved and that is a harsh assumption to make.

 

[taniaaust1]

What got her to the point that she was able to start sitting up and getting out of bed? That is a fair question and there is no reason for people to be leaving PR just because someone is questioning how she got to this point. You don't just suddenly decide one day after laying in bed for nine years to get up. Something got her to this point.

I got the impression from the original article that it took a lot of work for her to get to that point. She could of been learning to sit and building those muscles to do so, no doubt doing some exercising her legs in bed etc in the months or so before getting out of bed. I wasnt as far as I read an instant over night progress (and then walker, haress and people holding her up were used). She herself said she had to work up to it. Sounds logical progress to me for something who'd been laying for a very long time.

 

[taniaaust1]

I just tried to explain my intentions to clear the air, but you choose to continue to see it how you first perceived it. It's clear my presence is not wanted on this forum by many and I try to respect that while still trying to present points that I think aren't being considered. I'm asking for some leeway from this point on.

not wanted on the forum by many? ***wondering if when you say that if you've had problems in other threads as I certainly didnt see many having an issue with you***
..............

This thread really seems to have people reacting. Recovery threads often to seem to end up with lots of reacting people.

 

[xchocoholic]

I'm doubting ME and CFS as a proper diagnosis in general. Imho, to assume any pwc would be against another pwc making improvements sounds ludicrous to me. Esp people on a health message board.

Some of us see ME as a wastebasket diagnosis and are looking for the "real" cause of ME. So far lyme, celiac, mold and weakened immune systems / multiple infections are apparent. But are they causes, co-factors or a result ?

Saying ME is a wastebasket dx doesn't mean ME isn't real. Our symptoms are real. We just don't know what's really causing these because proper testing wasn't done to determine the cause or co-existing factors. They're lumping people with similar symptoms together not similar lab results .

I'm not sure how common improper testing is for pwcs in the US nowadays.

Tc ... x