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

[MeSci]

As I have said - and Jess has also said as well (see above somewhere) - the NHS funded her stay and they had to fight for the funding. As for exact cost I would not know.

A lot more than the cost of a reclining wheelchair, which they won't fund.

 

[MeSci]

I have a suspicion that a proper economic analysis needs to be done to see if ignorance, buck passing and failure to perform adequate testing, and hence leading to misdiagnosis, costs much more money in the long run than anything saved.

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.

 

[cmt12]

This is used in psychogenic and related literature.

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.

 

[TigerLilea]

Here. Read her Facebook Page: The World of One Room

I honestly do not know why some in this community have to be like they are being. This young lady was able a few months ago to sit up unaided for the first time and fix her hair. To brush her teeth (with help at the time - see photo), and now stand and walk (carefully).

Is it that people fear seeing this progress in that in might somehow undermine how serious ME is? Nine years she was in bed and being tube-fed.

I mean it's all there on her page.

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.

I'm very happy for this young woman that she is starting to get better. However, I'd like to know what her treatment was. Why is she suddenly able to do this? Why not five years ago? If she was this ill, why wasn't she hospitalized in a children's hospital getting around the clock care trying to figure out why she couldn't get out of bed? I'm having the opposite reaction to some people here. I think it is stories like these that hurt CFS/ME - not help our cause.

 

[Valentijn]

However, I'd like to know what her treatment was. Why is she suddenly able to do this? Why not five years ago? If she was this ill, why wasn't she hospitalized in a children's hospital getting around the clock care trying to figure out why she couldn't get out of bed? I'm having the opposite reaction to some people here.

I'm guessing that she was able to get treatment due to finally winning a fight over funding for treatment. She was hospitalized for several years, though I'd be surprised if the doctors put much effort into trying to find the cause - they usually assume that they already know the cause and that it must be psychosomatic.

I think it is stories like these that hurt CFS/ME - not help our cause.

I partially disagree ... I think she's doing a great job of showing what severe ME looks like. But I think she's also being exploited to spread a very harmful CBT/GET message.

It's a pity that she couldn't use those funds to go to a real ME/CFS specialist and some real testing and real treatment. The hospital she's been at recently looks like a huge waste of money.

 

[Valentijn]

There is an old salesman's trick. You say some obviously right things, and make sure the mark, umm, the customer agrees. Then you say some slightly less obvious things, and get agreement. By the time you get to the punchline, or at least that is the theory, the sucker, ummm, customer, is ready to agree to anything. The sale is made - unless you suck at selling, or the mark, ummm, customer sees through it.

It hadn't occurred to me that these self-contradictory doctors and researchers might be deliberately misleading patients with that tactic. I'd just assumed they were ignorant and rather daft

 

[TigerLilea]

I'm guessing that she was able to get treatment due to finally winning a fight over funding for treatment. She was hospitalized for several years, though I'd be surprised if the doctors put much effort into trying to find the cause - they usually assume that they already know the cause and that it must be psychosomatic.

I partially disagree ... I think she's doing a great job of showing what severe ME looks like. But I think she's also being exploited to spread a very harmful CBT/GET message.

It's a pity that she couldn't use those funds to go to a real ME/CFS specialist and some real testing and real treatment. The hospital she's been at recently looks like a huge waste of money.

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??

 

[Min]

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.

Both the charities you mention are tiny compared to the MEA. This story is reported on the 25% Group's facebook page, where there lots of messages of support for Jessica have been left. The 25% Group's biannual newsletter has only just gone out, too soon to report on this. The charity volunteers are very busy with severe myalgic encephalomyelitis day on August 8th. IiME is run entirely by volunteers and has no membership or newsletter, it is a different organisation to the others.

Why are you referring to them as 'competitors' to much larger charities?

 

[SOC]

...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.

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 was bedbound when I started -- severe, but not very severe. Now I'm tutoring 30 hrs a week and doing some basic housework. I'm not constantly exhausted, I don't feel ill all the time, I can be upright all day, I sleep well, my cognitive function is greatly improved (although not back to my pre-ME standard). I am not cured, nor am I in remission, but I'm MUCH better than I was when I started getting specialist treatment 5 years ago. My uncle appears to be cured -- let's call it an extended remission for now. My daughter has had remissions and relapses, but has managed to live a reasonably normal life for the past 3 years or so, finishing engineering school and now attending graduate school in engineering and engaged to be married. That is a heck of a lot better than where she was 5 years ago, nearly passing out in class, coming home and collapsing every day after a couple of classes, feeling like crap every minute of every day... and going downhill rapidly.

I'm far from the only person here at PR that has seen steady progress under the care of top ME/CFS specialists. We are not "bouncing around endlessly from treatments", we are following a treatment plan that is helping us improve our condition.

Are you referring to people who are trying to get treatment from doctors who don't understand ME/CFS? They might bounce from doctor to doctor without making progress, but that's because they're trying to get treatment from doctors, whatever their motivation and dedication, don't understand the illness. It's like trying to get your endocrinologist to treat your cardiac condition. S/he might be kind and well-motivated, but s/he's not likely to give you the treatment you need.

It is absolutely untrue that "patients have no chance on either side of the aisle". Appropriate medical care can make a huge difference. Telling patients there is no chance is both untrue and unkind.

 

[Ambrosia_angel]

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.

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.

 

[cmt12]

SOC you make good points, of course, and I'm happy for your progress. There are many stories of people making improvements to their symptoms even with mind based approaches right? But there is no problem with pointing out the deficiencies with this approach. Why? Because what we are most concerned about is a cure, which is where I was coming from with that post. A patient looking to be cured will have a tough time because there isn't a consensus even on the strictly physical side. Surely, you can agree with that.

 

[SOC]

The posts on this thread are the reasons why I stopped coming on here.

And apparently you came back, so PR must have some value to you after all. Nice to see you again.

Just be happy for once and please don't slander her name which a few people on this thread are indirectly doing.

Perhaps you are over-reacting a bit? Everyone here has, in fact, expressed happiness that Jess is improving.

 

[Valentijn]

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.

No one questioned her diagnosis - she is very clearly a severe ME patient. But even she isn't claiming that she can walk now. She can now get out of her room using a sling which does nearly all of the work. That is a great accomplishment and undoubtedly a wonderful and liberating experience, but it is not proof of any physical improvement.

Unfortunately those who do not read carefully or have a pro-CBT agenda are rather twisting the situation to support their views. Correcting their inaccuracies is not an attack regarding her story or diagnosis.

Why can't you just be happy? Why question authenticity whenever you read a story about recovery.

Because when you and others misrepresent those stories it can be very harmful for all of us. The implied suggestion is that GET should now be afflicted upon even the severe patients, who previously at least had a respite from that.

 

[TigerLilea]

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.

Any time someone recovers from any illness is a great day. I think that we are all happy for this girl, however, I want to know what the treatment was. There is nothing wrong with asking the question. Was she using one of the known CFS protocols? anti-virals? antibiotics? anti-fungals? - WHAT??? 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.

 

[SOC]

SOC you make good points, of course, and I'm happy for your progress. There are many stories of people making improvements to their symptoms even with mind based approaches right? But there is no problem with pointing out the deficiencies with this approach. Why? Because what we are most concerned about is a cure, which is where I was coming from with that post. A patient looking to be cured will have a tough time because there isn't a consensus even on the strictly physical side. Surely, you can agree with that.

If you want me to agree that there is no cure yet, then sure, I'm entirely with you. There is currently no cure for ME. That's a long way from

...patients have no chance on either side of the aisle

which I firmly disagree with.

Stories of self-diagnosed (or diagnosed by overly broad definitions) people recovering temporarily using mind-based approaches are very different from clinical records of long-term improvement of patients diagnosed by experts using CCC or ICC. We don't yet have all the research we want into any type of treatment, but since we don't, I'm giving the objective data collected over time on strictly defined patients more weight than stories on the internet from anonymous random self-diagnosed people.

 

[Ambrosia_angel]

I

And apparently you came back, so PR must have some value to you after all. Nice to see you again.


Perhaps you are over-reacting a bit? Everyone here has, in fact, expressed happiness that Jess is improving. Not one single person has slandered her name.

I did not come back expecting such negativity towards something all of us should be hapy about. Maybe I am over-reacting but when its to every single person who has made a recovery post I can't help it. Everyone is entitled to their opinion I agree. But I also wanted to voice my observations on this common reaction. I am not the only one on this forums who has noticed this.

People can recovery. Let's try to remember that. Just because its not with anti vitals or pharmaceutical medication, doesn't mean that shes different from any other CFS patient using the ICC criteria.

Edit: I just read your last post. This isn't really directed at you

 

[TigerLilea]

I

I did not come back expecting such negativity towards something all of us should be hapy about. Maybe I am over-reacting but when its to every single person who has made a recovery post I can't help it. Everyone is entitled to their opinion I agree. But I also wanted to voice my observations on this common reaction. I am not the only one on this forums who has noticed this.

People can recovery. Let's try to remember that. Just because its not with anti vitals or pharmaceutical medication, doesn't mean that shes different from any other CFS patient using the ICC criteria.

Edit: I just read your last post. This isn't really directed at you

I don't see anything here as being negative. We are simply having a discussion and asking questions.

 

[cmt12]

That's a long way from

which I firmly disagree with.

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.

 

[Ambrosia_angel]

I don't see anything here as being negative. We are simply having a discussion and asking questions.

Yes I know. Sometimes questions can

No one questioned her diagnosis - she is very clearly a severe ME patient. But even she isn't claiming that she can walk now. She can now get out of her room using a sling which does nearly all of the work. That is a great accomplishment and undoubtedly a wonderful and liberating experience, but it is not proof of any physical improvement.

Unfortunately those who do not read carefully or have a pro-CBT agenda are rather twisting the situation to support their views. Correcting their inaccuracies is not an attack regarding her story or diagnosis.

Because when you and others misrepresent those stories it can be very harmful for all of us. The implied suggestion is that GET should now be afflicted upon even the severe patients, who previously at least had a respite from that.

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.

 

[SOC]

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.

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.