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

[lansbergen]

what we have is autoimmune. no amount of antivirals or antibiotics or anything we pump into our system is going to make us recover until they address the autoimmune nature. our immune system will remain weak and we will just keep getting infections.

I disagree. Autoimmunity always was and still is a weakness bid

 

[Firestormm]

@Firestormm 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?

You can get tested on the NHS. But chances are that unless it is an active infection the 'ranges' will not pick it up. The NHS does Lyme testing and EBV - would be daft if it didn't. But if you are told your tests are negative and you believe you do have e.g. Lyme then I guess you would seek a second opinion.

Some choose to venture outside of the UK for Lyme testing and receive positive results as you know. Though whether or not the testing is as good, or the ranges different, and the resulting treatment curative or helpful overall and demonstrably so in a clinical trial: I honestly don't know.

Personally if the results from a UK NHS test said negative I wouldn't be inclined to pursue it: but then others can and do.

What this has to do with Jessica I don't know. I wouldn't want to sidetrack this story.

 

[Firestormm]

I don't think ME is any different than other debilitating illnesses. There are different severities, some with MS can go into remission while others are in a wheel chair. I'm thinking genetics plays a bigger role?

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

Yes. The Americans don't seem quite so good with their stories do they? Not a criticism but in the UK over recent years I have seen more and more ME stories coming out and not all of them as negative as they used to be.

I think this one about Jessica is especially good. And with it being Severe ME Day next week (8th August) nicely timed too.

 

[Min]

From the Express

"For vast numbers of severe sufferers, though, the reality is that they languish disbelieved and untreated because the NHS doesn't provide the care and understanding that people with this illness need to overcome its worst effects. They remain isolated and cut off from the rest of society because they are often too ill to leave their homes, they become bed bound and - in the worst cases - need to be fed by tube

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.

 

[Firestormm]

BTW talking of Severe ME Day (8th August). Stay tuned for another possible spread on Monday. Hopefully.

 

[Firestormm]

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.

It was NHS care Min. Or at least paid for by the NHS. According to her close friend who posted on the MEA Facebook page earlier.

Re private treatment, her stay was paid for by the NHS. Jessica is a good friend of mine, I recommend checking out her Facebook page which is called 'the world of one room'

Of course the situation needs to change to better allow others the same opportunity. But remember the article talks about physiotherapy and hydrotherapy: these aren't wonder cures. It is rehabilitative care.

My point is that if other ME services up and down the land extended their care to in-patients in such a manner - I doubt very much if you would find that satisfactory.

 

[Mij]

Yes. The Americans don't seem quite so good with their stories do they? Not a criticism but in the UK over recent years I have seen more and more ME stories coming out and not all of them as negative as they used to be.

I think this one about Jessica is especially good. And with it being Severe ME Day next week (8th August) nicely timed too.

I also think that it's so bad in the UK when it comes to ME awareness and care that it's possible patients who are ill feel the need to tell their story.

 

[Firestormm]

I also think that it's so bad in the UK when it comes to ME awareness and care that it's possible patients who are ill feel the need to tell their story.

Actually I disagree. I just think we are more engaged. Trying to gain the attention of the c.1,000,000 Americans supposedly affected seems to me to have been impossible. And I do not understand why.

But I don't want to take the story off on a tangent.

 

[cmt12]

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???

Well, the physical symptoms that are mentioned seem to match, right, so I assume you are talking about the fact that she was completely disabled for so long? I know this is a sensitive topic around here, but I think it should be considered that there are the physical symptoms and then there is the reaction to those symptoms which MAY have a back and forth effect. It is completely valid to say that how a patient reacts to their physical symptoms is RELATIVELY insignificant compared to the physical but I don't think we should say that it is COMPLETELY insignificant. I say that with no judgment and am pleased to see the progress she has made.

 

[bertiedog]

I don't think we know that. I'd agree it looks on the cards for at least some of us, but others may have an active infection.

Only 3 weeks ago I got my test results from Infectolab showing I had "an active infection of borreia" plus at least one co-infection so I believe I don't have ME/CFS at all but I have Lyme's disease.

Already only 6 week after being on 1 mg LDN and 2 weeks on herbal tinctures plus other herbs I am so much better that I cannot believe it. My energy is wonderful and I am doing so much more physical stuff like cutting down big raspberry canes, even in hot weather it didn't make me ill. I was able to make dinner and then go and visit a friend. When I got back took my dog out for a good walk and could feel it at the end but certainly not feeling ill at all and this evening I still feel well but I am resting.

I don't expect to always feel so good because only last weekend I was in a lot of pain in my neck and shoulders because I had a massage which obviously stirred the bugs up and I didn't feel well for 2 days but after that started to feel really well.

I got my diagnosis in 2000 but I had had very poor health since 1979 but I do feel hopeful now, I don't expect to get rid of this completely because I have had it for so long but I think I can be so much better than I have been for so long.

Pam

 

[Gingergrrl]

You can get tested on the NHS. But chances are that unless it is an active infection the 'ranges' will not pick it up. The NHS does Lyme testing and EBV - would be daft if it didn't. But if you are told your tests are negative and you believe you do have e.g. Lyme then I guess you would seek a second opinion.

Some choose to venture outside of the UK for Lyme testing and receive positive results as you know. Though whether or not the testing is as good, or the ranges different, and the resulting treatment curative or helpful overall and demonstrably so in a clinical trial: I honestly don't know.

Personally if the results from a UK NHS test said negative I wouldn't be inclined to pursue it: but then others can and do.

What this has to do with Jessica I don't know. I wouldn't want to sidetrack this story.

@Firestormm I just posed the question in regard to Jessica b/c I was wondering over the nine years that she was bed-bound if she would have had access to testing that could have shown whether she had any active infections, etc. I did not know of her story before this article and it was very inspirational and I am proud of all of her hard work. I just wondered what testing or treatment she may have had access to that led her from bed-bound to walking.

 

[SilverbladeTE]

1) M.E. *DOES* vary a great deal. I had it "light" at first, could go to local college etc, now it's much worse, way it's going I fear I'll be housebound in couple of years.

We do not "know" what M.E. is exactly so cannot say what is/isn't M.E. to be precise anyway :/
One of the reason I am so angry at the psych swine is they have prevented us understanding what is/isn't M.E. to create specific tests, so we have no idea how many of us have this...odd thing, vs others who've got undiagnosed Lyme Disease, poisoning (OP, mercury and others)..or we do have M.E. plus these other things?

The "systems" we have in medicine etc are moronic, backward, Victorian and go way back to Aristotle BULLSHIT stupidity, it's religious, cult, guild etc, they aren't interested in understanding, they only want to control, hence the crap.

Some poor souls suffer horribly, but that is common in illnesses where #1 patient can be immune, #2 can be resistant, #3 can be killed outright, #4 it sets off a bug the body had under control (for example, tuberculosis), #5 it may set off complex reaction leading to cancer or other long term organ problems, and so on and so on
as I've said several times, there's basically 70 trillion combinations of Homo sapien, from the mother and fathers chromosomes

the full potential number is just insanely large, hence you get extreme variance in how disease act on people, that is literally why we have a "sex" based procreative technique.
You get lots of variants so even with Ebola for example, some folk will be immune...but some folk will be more susceptible to other things.
Real world biology is so complex it makes things like the Large hadron Collider pitifully simple by comparison.

2) Antivirals and other drugs may help by reducing other on-going infections.
Total load in immunosuppressed people can end up spiralling out of control as each little bit adds up and up....

3) yes the Mail and British Establishment want to push "YOU CAN GET WELL!" bullshit as they are fascist evil scum who want to end welfare, but even so not every reporter or story is bad or wrong.
I fear they are pushing the "you can get well!" line but this lady has had some improvement which is damn good thing
But that severity is my definition of living hell, and I wouldn't wish it on the worst scum on this Earth never mind a child or young person who should have a full life ahead.
I kepe going in part by remembering the beautiful sunsets by the rivers and hills I adored.
to deny a person even that possibility by robbing them of much of their life....I do not like.

 

[wdb]

This is from the place where she was treated, it looks no better than any NHS offering to me.

Over the last 20 years we have seen many patients with Chronic Fatigue Syndrome (CFS)/Myalgic Encephalopathy (ME) and unexplained fatigue. As a result of our experience we have now developed a management program that can be personalised to meet the individual needs of in-patients with CFS/ME. It reflects the NICE clinical guideline 53 for the management of CFS/ME.

In particular, it acknowledges the need for: "shared decision making between the person with CFS/ME and healthcare professionals." (Guideline 1.1.1.1)

We also aim to: "establish a supportive and collaborative relationship with the person with CFS/ME and their carers to facilitate effective management of the condition." (Guideline 1.1.1.2)

Our programme develops: "an individualised management plan with the person with CFS/ME and their carers, if appropriate." (Guideline 1.1.3.3)

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.

The objectives of the programme are: "sustain or gradually extend, if possible, the person's physical, emotional and cognitive capacity and to manage the physical and emotional impact of their symptoms." (Guideline 1.6.2.1)

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

 

[Daffodil]

I disagree. Autoimmunity always was and still is a weakness bid

what do you think this is?

 

[rosie26]

@SilverbladeTE I had ME *lite* too. For about 8 years, becoming increasingly worse as the years went on. The flu threw me into sudden severe onset - full on.

 

[Firestormm]

The World of One Room

Facebook

9pm 31 July 2014

"Dearest people, my post didn't send earlier! We have also made the daily mail too! Boom! All about the #longwayup - one small step, one huge step for understanding severe M.E! We shall also have the BBC South East doing a news report tomorrow so what a wonderful way to raise awareness! That's the main aim, so that someone will not suffer as much as we've all had to. My main aim."

Jessica

 

[lansbergen]

what do you think this is?

Don't know what she had but my problem is an ongoing cell danger response to an infection that is not cleared.

A response to an infection is not for no reason as autoimmunity is claimed to be. .

Clearing intracellulair infections without attacking self is an illusion.

 

[Daffodil]

"Clearing intracellulair infections without attacking self is an illusion."

what do you mean by this?

 

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

Its great to hear a positive story and i hope she continues to improve. She looks really happy in the pic.

I'm surprised when i hear people say, 'this is not the ME they know.' As thats how i feel when i hear about a 'lack of' a prolonged phase of being bedridden. Its like hearing about a different illness and experience. Mine went on for years.

We're all different and have different experiences but ultimately all have the same goal. We want our life back, plain and simple.

 

[SOC]

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!