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

[Gingergrrl]

I don't understand why she cannot get a wheelchair? Sorry if this was already explained!

 

[SOC]

I don't understand why she cannot get a wheelchair? Sorry if this was already explained!

She can't get it paid for by national health. It's like your insurance refusing to pay for a reclining wheelchair because they don't think your diagnosis justifies it.

 

[Gingergrrl]

But her insurance/NHS paid for her entire hospital stay and knows she's bed bound? I looked at her Facebook page and it seemed strange wheeling her bed around the mall vs. a wheelchair so I thought maybe she did not have the ability to sit up (but then how is she walking?). Her story is confusing to me.

 

[Ambrosia_angel]

Are you forgetting about measurable objective data like the tests for autonomic dysfunction, pathogens, and immune dysfunction, or the CPET test? And those are not the only tests that can show both abnormalities and changes in condition. These are not subjective patient reports, they're measurable data.

Reports on improvement without objective data to support it, especially when the patient is under the influence of CBT practitioners encouraging him to deny symptoms, should be regarded with some degree of skepticism. Claims for positive treatments should come with objective data that shows that improvement, not subjective reports susceptible to emotional influences.

Let me be clear on this point -- I am fairly confident that Jess has severe ME, as confident as I can be without seeing her medical records. She has had a miserable 9 years. I'm thrilled for her that they have found a way, through this sling mechanism, for her to move around her rooms a bit. That has to be incredibly freeing. Do I think any form of CBT or GET has caused her to recover? No. I don't call her condition recovered. But she has a little bigger world now, and that's a wonderful thing for any ME patient.

I said

Yes I know. Sometimes questions can

CFS is an illness that's severity is mainly measured by the patient which is common in most illnesses. If a patient says that they have improved physically, then we don't really have any place to question her. Its like saying someone has deteriorated but claiming that they are physically fine. Nobody would do that.

When a patient with a chronic illness says they are recovering they do not need to go to the doctor to get tests to prove this. ME is not the only illness which physio may help. I personally didn't see any improvement with physiotherapy but I have no right to disprove that it hasn't helped some other people with ME. Whether that's 90% or 1% of patients. It helps some and we should be so happy that it has helped jess. Jess or any other individual person who is recovering does not need to do objective tests to prove themselves. She does not need any sort of cpet, immune dysfunction, atomic dysfunction or pathogenic test to show that she is gradually improving. She is gradually improving in her opinion and that's all that matters. Who knows what will happen in the future but for now she seems to be going in the right direction. But for a few people on here that isn't enough

I am improving too. But if I said how, I know I would get negative responses..

 

[lansbergen]

I am improving too. But if I said how, I know I would get negative responses..

That explains it.

 

[xchocoholic]

Hi @Ambrosia_angel

Maybe what you're missing is that those of us who are mostly housebound, couchbound or bedridden want to improve too SO we're trying to learn from those who improve. If we don't know what this person did we can't learn from it. That's why we're on PR.

Many, most ?, of us couldn't tolerate cbt so we don't want that to be seen as a valid treatment for me/cfs. This cbt therapy may not work out for Jess either.
In which case she'll want to know her options.

Btw. When I stopped failing the Romberg after 16 years I had to prove it to my doctors. I was happy to prove it. I didn't expect to tell everyone that I could walk normally again without providing proof tho.

I had to have a repeat endoscopy for my celiac dx. I see my cardiologist for updates. Etc.

I've had to prove that I'm disabled with me/cfs + other stuff to my insurance company and social security every year for 24 years too.

Fwiw, imho it's been beneficial for me both physically and emotionally to see WHY I'm considered disabled. Sure it sucks but it's a valuable reality check.

Tc .. x

 

[TigerLilea]

http://www.burrswood.org.uk/hospital/categories_of_care/chronic_fatigue_syndrome

>>>If a full CBT or GET programme is inappropriate: CBT and/or graded exercise therapy (GET) are offered to people with mild or moderate CFS/ME and provided to those who choose these approaches as currently these are the interventions for which there is the clearest research evidence of benefit (Guideline 1.6.2.4). However, these will correspond with the variety of CFS/ME patients' physical and psychological needs. In patients with severe CFS/ME, components of CBT or GET may still be offered, in combination with; activity management strategies (1.6.2.22), sleep management (1.4.2.1) and relaxation techniques (1.4.2.6), (Guideline 1.6.2.5). The building of a trusting, professional relationship is foundational to our work. The importance of therapeutic relaxation, both physically and mentally, in conjunction with a pacing programme is taught early on and the patient encouraged to adopt these principles each day. We aim to provide the person with CFS/ME with an understanding of how to manage their symptoms to facilitate the highest quality of life that is possible for that person.<<<

 

[cmt12]

We all know why there are strong emotional reactions toward CBT. Like many here, I don't use it or have any need for it. However, just because that is true, that doesn't mean I don't think anybody could benefit from it. It's like a four letter word around here.

Who could benefit from it? Someone who might feel overwhelmed by their condition to the point where they don't feel secure in their body or environment, causing an over active fear response and stress avoidance. The goal is not to cure but to simply get out of the downward spiral and back to a baseline of functionality.

Now, I don't believe in anything that denies symptoms so if that is being taught, I have a problem with it. Introspection will cause you to become more aware so I can see how people can perceive that as getting worse, but what's really happening is that you become more aware of symptoms that were already there.

 

[SOC]

We all know why there are strong emotional reactions toward CBT. Like many here, I don't use it or have any need for it. However, just because that is true, that doesn't mean I don't think anybody could benefit from it. It's like a four letter word around here.

Who could benefit from it? Someone who might feel overwhelmed by their condition to the point where they don't feel secure in their body or environment, causing an over active fear response and stress avoidance. The goal is not to cure but to simply get out of the downward spiral and back to a baseline of functionality.

Now, I don't believe in anything that denies symptoms so if that is being taught, I have a problem with it. Introspection will cause you to become more aware so I can see how people can perceive that as getting worse, but what's really happening is that you become more aware of symptoms that were already there.

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.

Many ME patients have been harmed by the CBT/GET used in the UK. What is particularly egregious is that patients are denied basic medical care like testing for known abnormalities because according to the CBT/GET philosophy, that will encourage patients in their false illness beliefs. They don't test for known physical abnormalities and then claim there are no physical abnormalities.

There is a horrible history of abuse of the ME community from the BPS school of psychology which has managed to dominate the medical perception of the illness in the UK. If you don't know much about this, I suggest you do some reading about it before you chastise patients for taking a VERY dim view of CBT and GET as legitimate treatment for ME.

 

[alex3619]

I have zero doubt that this is the case. Does it come down to that bane of politics - short-termism? It seems to apply in many other organisations too. Do they have to prove that they have made a profit/not overspent in the short term (i.e. annually) in order to get government funding/keep their contracts? I expect so.

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

 

[alex3619]

This is a good post and I agree with you but let's keep in mind, it happens on both sides. Doctors and researchers are good at identifying symptoms within all the different systems of the body. But patients are just as deceived when these doctors present their theory of causation with any level of certainty, which happens all the time. This can cause patients to be stuck in or bounce around endlessly from treatments focused on immune system, Lyme, HPA dysregulation, gut, etc. I look at the situation now and patients have no chance on either side of the aisle.

Of course. Evidence and reason are lacking all over society, and everyone is vulnerable. Our entire economic future is based upon economic theories that have repeatedly been debunked, yet because nobody has a viable alternative they persist. Its not enough to prove things wrong, these things exist for a reason, we need alternatives.

PS I do agree with @SOC though that patients can have good chances under the right circumstances. In large part this is because, in my view, this is not an either or thing but multidimensional, and many doctors, experts (and indeed patients) are well grounded in how to respond to these issues. Its just that they are dwarfed by those who are not well grounded, some claiming to be CFS experts, and so can lead patients up a path to disappointment or even worse.

 

[alex3619]

I am very happy that Jessica is making improvements.

One of the issues though is that CFS and ME are highly politicized. Many of us are aware of that. Newspaper articles etc. are also often misleading. In order to come to grips with things we need to look at all the angles.

That does not mean we are not happy for Jessica, though I cannot speak for anyone else. I would like to see Jessica make a full recovery, and indeed every other patient, regardless of whether or not they have ME, a different diagnosis, or whatever treatment they used to get there.

Treating ME as non-political has been the bane of advocacy for a very long time. Its entirely political. Its much more political than scientific. I was a science advocate for around sixteen years. Then in 2009 over the XMRV fiasco it finally dawned on me how pervasively political this all is. Now I try to deal with both politics and science.

If Jessica were able to post here privately in the support area the posts would be entirely different. I like to think we would all be happy for her. This thread is however about a media piece portraying ME a particular way. So the range of factors are open to discussion so far as I am concerned.

 

[cmt12]

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.

Many ME patients have been harmed by the CBT/GET used in the UK. What is particularly egregious is that patients are denied basic medical care like testing for known abnormalities because according to the CBT/GET philosophy, that will encourage patients in their false illness beliefs. They don't test for known physical abnormalities and then claim there are no physical abnormalities.

There is a horrible history of abuse of the ME community from the BPS school of psychology which has managed to dominate the medical perception of the illness in the UK. If you don't know much about this, I suggest you do some reading about it before you chastise patients for taking a VERY dim view of CBT and GET as legitimate treatment for ME.

Thanks for the explanation, but I haven't seen anyone with this attitude toward CFS/ME and CBT on this forum and based on what was posted in this thread, the doctor treating this girl doesn't have that attitude either. So unless I am missing something, questioning whether CBT should be used as treatment for this girl and taking it further and questioning her diagnosis based on the fact that she may have improved from CBT seems completely unnecessary.

 

[Gingergrrl]

I have to finally add my two cents on CBT as a technique in the U.S. when it is used correctly. I am a social worker and worked in a hospital based outpatient program for adults with mental illness for 12 yrs. The patients I worked with did not have ME/CFS, so I am in no way addressing this issue, or how CBT is politically used and distorted in the U.K.

However, in the U.S. in the program I worked in for 12 yrs we used CBT and DBT as solid techniques in helping the patients we worked with to cope with their illness. It was never, ever used to deny that patients had an illness, only to cope with the illness and distorted beliefs in a safe and positive way.

For example in patients with depression, anxiety, OCD, eating disorders, self-harming behaviors, suicide attempts (again nothing to do with ME/CFS) if someone held a belief that was harmful to them or causing them distress, we used the techniques in group therapy and they were very effective. In fact, I had never seen (true) CBT in a negative connotation until I came to this board.

However, when I understood how CBT is distorted in a sick and unhealthy way to treat patients with ME/CFS in the UK, I am horrified by it and I fully believe it is harming those patients. And don't get me started on GET and forcing these patients to exercise.

So, for those of us to question the harm of certain techniques, is NOT the same as questioning the PWC or saying that they are not ill. I have not a shred of doubt that Jessica has severe ME and is very, very ill. I do have doubt if the techniques being pushed on her are for HER or to use her as a statement for political gain.

If it was about her and what she needed, she should have a wheelchair and she should have been tested for active viruses and medical issues that could be corrected. She could have POTS or OI or celiac disease or any number of co-morbid issues on top of her ME/CFS that are not being treated if all she is getting is CBT and GET.

I am thrilled for her that she was able to get out of bed and take a few steps but afraid she could be being used as a political pawn to make a statement.

 

[TigerLilea]

Thanks for the explanation, but I haven't seen anyone with this attitude toward CFS/ME and CBT on this forum and based on what was posted in this thread, the doctor treating this girl doesn't have that attitude either. So unless I am missing something, questioning whether CBT should be used as treatment for this girl and taking it further and questioning her diagnosis based on the fact that she may have improved from CBT seems completely unnecessary.

If someone is very ill and can't get out of bed, then all of the CBT in the world isn't going to get that person up. The fact that she was able to start sitting up and now getting out of bed and starting to walk makes me question what was wrong with her in the first place. I'm not saying that she doesn't have CFS/ME, but I am questioning why her parents would let her languish in bed for the past nine years. No matter what was wrong with a person, if they stayed in bed long enough they too would become bed bound and unable to do anything.

 

[taniaaust1]

I don't understand why she cannot get a wheelchair? Sorry if this was already explained!

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. Things are going by me too fast for my brain to deal with, it feels just like being on a scary fast side show ride with things whizzing by real fast (gets my adrenaline up real fast which isnt pleasant).

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

 

[taniaaust1]

I'd like to know what the treatment was that she received. My alarm bells go off when I read stories like these because this is so NOT the CFS/ME that I have. Why would any parent let a young child languish in bed for so many years? And why is it that these types of stories tend to always come out of the UK???

I was bedbound for 9mths with ME (around the second year of my illness), my legs much of that wouldnt even support my weight I was so weak due to ME, and trying to do anything at all just made me worst, just struggling to feed myself with a fork, had me then sleeping 23 hours to recover from the effort it took to feed myself from a bowl as I got post exertional impact just from that.

I was unable to walk much of that time to the toilet, I basically fell out of bed everytime I needed to go to the potty by the bed, struggled to hold myself up to do so and another had to empty it often for me. I'd then fall asleep on the floor, not having the strenght to pull myself back onto the bed for many hours after that. Before I started doing the potty thing by the bed, I'd been crawling to the toilet for months, it was a many hours journey for me to crawl to the toilet as I'd have to rest along the way and fall asleep (and this toilet wasnt far at all).

What do you suggest those parents should of done? There is nothing which can be done at all to help those of us who crash to this degree of ME (I crashed into that state after pushing myself too hard) except give tube feeding etc.

How does one get a person out of bed when they cant even hold their body up (weight bear) with their legs and leg strengthening exersies in bed just make one even worst, due to the effort and makes not just the legs further even weaker but the whole body too.

There can also be paralyses happening too with very severe ME (Ive had paralyses in body parts a few times when I was very severe, one day I couldnt even move fingers at all! So how are you going to get that person out of bed? Very severe ME patients often cant even have any stimuli.

If you are thinking that she should of been put in a wheelchair, please check out my previous post.

This isnt about ME people here who stay in bed due to feeling exhausted but ones who are so sick with ME they cant be out of bed, no capacity to do it.

Usually out of the UK comes the postive stories which only tell of CFS or if ME very minor ME (at least 95% of the stories there are wonder recover stories of an illness I do not at all recognise). Its good some more reality stories are coming out for how it is or has been for the rest of us, the severe group which makes up 25% of those who have ME (the homebound and bedbound ones). Its sad the very sick ME group are so little heard about in the media.

No. And I wasn't sure about 'deadly virus' either

@Firestormm Maybe she started with the classical ME virus like start in which many of us say our ME started from an unknown virus. I guess in her case it could be called deadly as due to what this did to her, without all the support and care she received she would of surely died.

I actually find my NHS physio to be very helpful. I speak to her on the phone once a month and we talk in detail about my activity management and how I can reconcile pacing with managing to gently push at my physical boundaries. I don't feel I would have seen the improvement that I have without her help. We balanced my boom and bust and we've sorted out my sleep. Just having someone to regularly touch bases with and get feedback from who has seen a wide diversity of patients has been very valuable.

@Cheesus

Yes I know some find GET (gently pushing at physical boundries helpful) but for the very severe group, this thing cant be done till they are starting to improve anyone to the point they are able to do a little bit more. Most very severe ME ones cant do ANYTHING more, they are laying there just barely living.

When I had very severe ME I couldnt even have people around me as it would make me worst, so how are many of these ones supposed to have a physio working with them. Talking to me would make me worst due to the brain stimuli my brain couldnt handle (it would send me into major shakes), any movement around me would make me worst, also too much brain stimuli (I had to have my room as dark as possible).

My own children, I was left not able to understand speech for a time and last my capablity to speak more then just single words (I was actually ended up having to communicate food via sign language). I couldnt even be hugged by my children as it hurt my body too much, the sheets on the bed were hurting me so a physio wouldnt have been able to work with my body. At times I was comatose for up to 3 days at a time, not even waking up (Im lucky I didnt die, I didnt even wake for drinks)

When I recovered enough to start being out of bed and was on the slow improvement, I sought out a physio but ended up getting injured by her exercises, my body was so weak I tore a muscle on the first one I tried (which was a sit up). I was also left unable to get food to my mouth with a fork as my hands were shaking so much after one session with a physio who I'd been told was experienced with dealing with ME/CFS.

All she turned out to be experienced in was dealing in "CFS" and didnt understand at all the big impacts of doing anything, even a wee thing, can have on the severely ill due to postexertional P.E.N.E. so her "reabilitation session" which was supposed to start to strength my body, turned out to be a very negative experience for me.

Would a patient like Jessica who was in a special hospital for ME ever receive testing for things such as EBV & herpes viruses, Lyme disease, etc, or would this never occur in the UK? I understand the NHS will not do it but can someone choose to pay privately for those tests if they are able or are they forbidden?

@Gingergrrl43

In the UK it goes against their actual medical recommendation that ME/CFS be tested for certain things. Ive seen eg POTS listed in those things. A doctor doing not recommended testing could find themselves dragged over the coals over there one could say. UK is a sad situation.
.........................

It is interesting though that most of these news stories come out of the UK.

@Mij I believe its cause there has been such a war over ME and CFS there in UK, has given ME/CFS media attention and lots of it over the years. Here in somewhere like I are in Australia, it basically never gets the news, so isnt in public attention and hence one dont hear about things over here (except in cases like Theda Mint who had very severe ME who's now deceased). Hopefully with our new national centre we will get some public attention???

 

[xchocoholic]

Hi @taniaaust1

So do they test the me/cfs patients for ms, celiac, lupus, anemia, reynauds, ebv, thyroid disorders, blood glucose disorders, cancer, ataxia, heart or circulation problems, h pylori, etc or other known diseases I missed ?

Do they do tilt table tests in the uk ?

And when they decide to try cbt or get do they run neuro psych tests on these patients ? Brain scans ?

Tx ... x

 

[taniaaust1]

Hi @taniaaust1

So do they test the me/cfs patients for ms, celiac, lupus, anemia, reynauds, ebv, thyroid disorders, blood glucose disorders, cancer, ataxia, heart or circulation problems, h pylori, etc or other known diseases I missed ?

Do they do tilt table tests in the uk ?

And when they decide to try cbt or get do they run neuro psych tests on these patients ? Brain scans ?

Tx ... x

They do the very standard tests to rule out certain things before a CFS diagnoses. I cant remember now what else was listed in the tests they recommended not to be done other then the POTS, umm it may of been B12 testing wasnt advised either. They were against some tests for some very common things people can have which could help rule out a ME/CFS diagnoses. Sorry my memory issues I cant tell you more thou I was only reading something on this a few days ago and I was horrified at what they were advising not to be done.

I cant remember where I saw the article either to direct you to it. Maybe another knows.

 

[taniaaust1]

If only physiotherapy and hydrotherapy worked for all of us. Unfortunately, I doubt it does much for infections or immune dysfunction.

It's wonderful to hear a story of a patient moving from completely bedbound to walking. Let's hope she continues to improve and lives a long, happy, healthy life! What a lovely, joyous smile she has in that photo!

I personally think these things can be helpful to the very severe ME group if they start to recover and only if they dont negatively affect ( I dont believe any amount of phyiso can help with to a ME recovery from ME thou) after being bedbound for a long time. I did myself a back injury which put me into hospital for a week unable to move, as as after I started improving and was able to leave my bed, my back muscles were all so weak so werent all that protective of my spine (I cause I guess it could be said I was deconditioned, hence I could of done with some physio or hydrotherapy).

I didnt know what gentle exercises to safely do which probably should of been done once I started to recover to slowly build up some body strength for properly sitting, able to bend over without risking back injury etc . Water therapy probably of helped and helped me to avoid an injury.

So thou I dont think these things can fix ME at all, I do think they can aid in recovery to get back some strength in important muscles again if someone is on the improvement. Someone being bedbound long time, suddenly getting out of bed and moving around, is at huge injury risk. I can understand once someone can do things again okay of having to work on building up strength and believe this is what she was refering to.

I personally thou dont believe many ME/CFS people loose become deconditioned enough to put their bodies at risk thou, but the long term bedbounds not previously able to leave their beds from my own experience, do have this issue.