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

[taniaaust1]

And she may have been. Spending that long in bed will cause deconditioning and the physio might have helped that.

As far as I can tell, Jess is far from cured, or even in remission. She's just managed to walk 3 steps after years of being bedbound. This round of physio may have helped her get past one of the secondary results of years of very severe ME, but it probably hasn't done anything for the ME itself. If the physio and hydrotherapy help her rebuild some muscle and cardiac and autonomic function, that's a great step forward for her, but it probably has nothing to do with her ME directly.

Thanks for this post, I just finished trying to say that myself but probably didnt make it as clear and now saw your post. I too are thinking that that physio probably helped deconditioning she would of certainly had and that she probably was improving, as ME can after a time no matter what is done!

I think she has A LONG WAY to go, she's not cured but just improving and could well crash while trying to recover more. I truely hope she dont but she still has a long way to go and we all know just how hard getting improvement can be with this illness and she's got a longer way to come back from.

I myself recovered from being bedbound (it took years to do that, years of slowly improving and doing everything I could which seemed to take me into a better direction. It would be so wonderful if she could do that too seeing she's on the improve) but it just took being hit by another virus for me to have this illness back again.

I wish her the best.

 

[taniaaust1]

I read the sad blog from the american girl. Its identical to what i went through during the first two years. Identical. I went down to 5 and a half stone. We presumed like she that i was just going to eventually die but it didn't happen. Its not over till its over. I know we can improve from that state. I'd love to hear that she does too.

Thanks for whoever put the link up for the American Girl, her and I have many things like, Im hoping to contact her now (maybe we can share dying together from that peace state we've made with decision of death).

Yes with this illness we can improve from an extremely bad state, Ive done it before too. My state of ME was so bad in the past at one point I was close to death.. 4 years from that thou I'd reached a full remission. One hella of a crazy illness we have with the way it changes.

 

[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.

Yes I agree. I was never VERY severe, but I was definitely in the severe camp - having serious difficulty shuffling to the toilet and so on. Sometimes finding it very difficult to be in the same room as people. Unable to travel in the car due to horrific vibrations. The first thing my physio and I did was manage my boom and bust. I basically had to do NOTHING all day every day. No TV or anything. I listened to some calming dharma podcasts but other than that I stared at a wall.

ETA: Oh and meditation. Lots and lots of meditation. I had to calm that sympathetic response down.

I was fortunate that I had a tiny energy bracket I could retreat into. From the sounds of it, when you were severely ill you did not even have that. It was probably the same for this girl. Physiotherapy isn't always about GET. Though my physio does call what we are doing now (though not before) GET, it is nothing like actual 'exercise. Yesterday I walked to the other side of my road and sat on the wall there for 5 minutes. I will do that twice a week, then increase the frequency, then move up the wall by a few metres. What I am doing is nothing like the GET we hear in horror stories of patients being forced to exercise.

 

[Cheesus]

From the Express


The situation is scandalous, it has to change. Not many people here can afford private care like this.

I don't believe the occasional phone call from a physio would have met the needs of someone who obviously requires intensive hands on physiotherapy.

If I had needed it, I would have got it. My physio was telling me she regularly visits people's homes.

 

[Valentijn]

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.

Excellent. Now show me where she has said she has improved physically. Show me where she says she can walk.

She has gone out to shops in a gurney with support personnel. She can get up and move around her new apartment using an electrical hoist which is attached to the ceiling and has a track going through the apartment. She has not claimed she can walk unaided, yet that is what you and others are claiming on her behalf - apparently without bothering to read her own accounts.

 

[Valentijn]

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.

The reports are that she had to fight very hard for the NHS to pay for treatment. But the BPS school is often strongly opposed to assistive devices, such as wheelchairs, or anything which might discourage us from making a miraculous recovery when we first hear the glory which is CBT

The mall photos involve a gurney, and she only recently moved home (via ambulance), so the gurney and the trip were possibly provided by the hospital while she was staying there.

She sounds like she probably has very severe and untreated OI, so can only sit up briefly. I haven't seen any indication that she can sit up without assistance, and when she stands and "walks" it is by having a harness attached to her which is then lifted by a hoisting mechanism. So someone using such a device could be "taking steps" but unable to stand up unassisted or walk under her own power. The hoist is attached to a rail which runs through the rooms she needs to use, and it can basically lift, carry, and deposit her as needed in that range.

But even with that device, I would imagine that she still needs daily assistance.

 

[Gingergrrl]

@Valentijn I went back and re-read everything more carefully than when I had first posted my question re: the wheelchair and it makes sense to me now. I had initially thought that she had walked three steps on her own and did not realize she was hoisted to a device that lifts and carries her.

I believe that Christopher Reeve, RIP, had used something like this in his PT in the hospital and it enabled him to move around while paralyzed but he was not actually walking on his own.

I agree with you that she probably has severe OI and I wish she (before she was this ill) had the chance to get a TTT or try a beta blocker & Florinef or something to give her a fighting chance.

Last question, what does the "BPS School" mean? I understand the politics but still learning the terminology and abbreviations!

 

[Valentijn]

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 ?

The NICE list of "Do Not Do" recommendations for ME/CFS are at http://www.nice.org.uk/guidance/cg53/resources/do-not-do . While they are usually not 100% saying not to do it in any circumstances, they are quite broad and vague. "The the head-up tilt test should not be done routinely to aid diagnosis." While that doesn't entirely preclude the possibility of it being done for a patient who shows symptoms, most doctors will probably read it as a TTT being useless for ME/CFS patients, even if they are symptomatic.

This a huge problem because 1) almost every ME patient has OI, and 2) it's hard for any patient to realize that they have OI since they've never heard of it and aren't routinely tested for it.

It's medical malpractice on a national scale. Many patients would be MUCH more functional and better supported with a fairly simple test, or even if a doctor were willing to check their standing blood pressure and do something about it.

 

[alex3619]

@ValentijnLast question, what does the "BPS School" mean? I understand the politics but still learning the terminology and abbreviations!

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.

 

[Valentijn]

Last question, what does the "BPS School" mean? I understand the politics but still learning the terminology and abbreviations!

It's the BioPsychoSocial school of ME/CFS researchers and clinicians. They claim that disease involves all three aspects, so it makes sense to treat all three aspects.

However the reality is that the BPS school completely ignores and actively suppresses the "biological" aspects, and does little or nothing with the "social" aspect except to blame friends, family, and society for enabling us or causing us to think of fatigue as an illness. They focus about 95% on the psychological aspects, both for supposed perpetuating factors and for treatments.

ME/CFS patients will often write their name out as bioPSYCHO(social) to reflect the actual attitude of the BPS school. There's no "bio", it's almost all "psycho", and "social" is an afterthought only given lip-service.

 

[Gingergrrl]

Thank you guys for explaining and that makes sense.

 

[Min]

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

It is astounding that it seems beyond the wit of the UK'S medical profession to test to find out what is physically wrong with her (and the rest of us).

Why are they choosing to believe a small group of psychiatrists holding extremist views rather than use their own common sense?

 

[Wildcat]

.
Burrswood Hospital, where Jessica stayed: http://www.burrswood.org.uk/hospital/categories_of_care/chronic_fatigue_syndrome


On admission: "an initial assessment is made to confirm the diagnosis." (Guideline 1.6.1.1) We use both the Oxford Criteria and the Canadian Clinical Criteria in this assessment. Only if indicated are blood tests taken to either exclude other conditions or to monitor potential biochemical abnormalities.



Wildcat: Burrswood uses UK Oxford Criteria and follows the NICE Guidelines, whilst saying that Canadian Guidelines are also used "on admission". But thats where any influence of the CCC ends. No Tilt Table, No Brain scans..... No Way. Burrswood follows the NICE Guidelines plus pastoral care.


Burrswood: '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).'



Its great that Jessica has been able to take a few steps, with mechanical support, and has the Practical help thats needed. Thats definitely a 'good news' story. But that is not the story for the majority, even severely/very severely sick, many of whom have to go through appeals to maintain basic sickness benefits, let alone access the amounts of care and equipment needed. The newspaper stories do not reflect the reality of living with ME, because they have a 'story' agenda.

Jessica remains very severely sick, and its not great to give a message that "pushing" is good.

Its also sad seeing so many patients, who having read the articles, thinking that Burrswood offers something new, mysterious, and successful, which helps people improve, and keep asking "what is it Jessica did to improve?".



The new trend in British national newpaper reporting on ME is 'Hope stories'. Unfortunately (but predictably) those UK Newspaper 'hope stories' do not include the amazing new bioresearch, such as reported from the Stanford Symposium (for example), which really do give us more hope, of a substantial kind.



Edit:
The important ME bioresearch now being done outside of Britain, including the inflammation research, has not been reported in the British National papers. The influential UK Science Media Centre, which vigorously promoted widespread international positive media reporting on the PACE (CBT/GET) trial, does not appear to be interested in ME Biomedical Science, as its response to ME bioresearch breakthroughs is a resounding and very obvious silence.


.

 

[Ambrosia_angel]

That explains it.

I did not use any sort of cbt or physiotherapy to get better. I found it unhelpful and a load of rubbish. So I don't agree with it in to treat the mass of patients. Esp cbt. I've never agreed with it. But quite a few people do find GET helpful, you just won't see them on a forum like this because they are usually better. Cfs or me is not the only illness Get is used for and all illnesses coincide one way or another.

 

[Min]

I did not use any sort of cbt or physiotherapy to get better. I found it unhelpful and a load of rubbish. So I don't agree with it in to treat the mass of patients. Esp cbt. I've never agreed with it. But quite a few people do find GET helpful, you just won't see them on a forum like this because they are usually better. Cfs or me is not the only illness Get is used for and all illnesses coincide one way or another.

In the UK, myalgic encephalomyelitis is the only physical illness to be 'treated' solely by graded exercise and cognitive behavioural therapy.

 

[Valentijn]

But quite a few people do find GET helpful, you just won't see them on a forum like this because they are usually better. Cfs or me is not the only illness Get is used for and all illnesses coincide one way or another.

GET doesn't help ME patients improve at all. Research has demonstrated this repeatedly, some of it by using actometers to track actual activity levels before and after treatment.

Those studies show that some patients say they physically improve a bit after GET, but they don't actually improve according to the objective (unbiased) measurements. Ironically, those studies come from the very people who believe GET works and are trying very hard to prove that it does.

 

[Cheesus]

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.

I find the bio-psycho-social school of thought really interesting. The question of how the external becomes internal is fascinating. The processes that go on which cause disease epidemics such as diabetes, anorexia and certain cancers. Most of what I have read an listened to regarding the BPS model actually gives equal weight to genetics and biological processes as it would to things like chronic stress and social norms.

Admittedly, I do not doubt that personal biases arise when some people talk about this stuff. The complexity and interdisciplinary nature of factors determining health can often invite biases grounded in a person's cumulative life experience. I am a social scientist, and so I tend to see macro trends in health and wellbeing as implying social factors as essentially causative for many disease processes. I am also a buddhist and, by proxy, have a keen interest in psychology and its interaction with our behaviours and the patterns that make up our lives. As such I also give a lot of credence to psychological processes when considering disease onset. When it comes to biology I am trying to do some catching up, but I will never have the same insight as I do into the other two. This is why it is good for people from different fields to talk so that they can really begin to understand one another and get a greater overall insight. BPS makes a huge amount of sense when approached from a communicative and sensible direction.

 

[Valentijn]

BPS makes a huge amount of sense when approached from a communicative and sensible direction.

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

 

[Min]

BPS makes a huge amount of sense when approached from a communicative and sensible direction.

Unfortunately in the UK it is used to deny patients with ME tests, treatment, benefits or belief.

 

[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

Yes absolutely. Many progressive and potentially revolutionary theories have been twisted to suit certain political agendas. Darwin's theory of evolution, for instance, was twisted into Social Darwinism and subsequently used by the Nazis to justify eugenics.

Perhaps all disease is 100% biological. I'm trying to think of an instance where this might not be true, and my instinct would be to turn to psychological diseases in particular. Here it would be very difficult with our current understanding to say what exactly the processes are that lead to, for instance, depression. Undeniably there are biological components. Neurology is highly important: how the brain is wired and the levels of neurotransmitters will ultimately determine how a patient feels. However, the path into and the path out of abnormal psychology/neurology might be, for some people, so tightly interwoven with the history and circumstances of their lives that differentiating between biological, psychological and social factors could simply become an academic exercise. Where does a history of an abusive relationship end and pathological neurotransmitters begin? The most effective treatment interventions would surely aim to look at all of these factors simultaneously.