Daily Telegraph: 'If an ME sufferer looks fine, the school assumes they are'

[Firestormm]

Education

14 June 2014
'If an ME sufferer looks fine, the school assumes they are'

After years struggling with chronic fatigue syndrome, student Rhia-Louise Nixon tells Peter Stanford how specialist support helps keep her schooling on track

Rhia-Louise Nixon estimates that she was absent for between 40 and 60 per cent of her time at secondary school, right up to GCSEs, because of ME (myalgic encephalopathy, more often called chronic fatigue syndrome by doctors).

It began, she recalls, when she was 11, soon after she had started at Hazeley Academy, near her family home in Milton Keynes.

“I got a virus. I didn’t really think much about it at the time. I just assumed I would get better, but then it wouldn’t go away. I lost co-ordination of my body and I even lost my eyesight for a time. My whole brain felt as if it was wrapped in cotton wool.”

It took a year for ME to be diagnosed, and that despite having a supportive family (her mother, Claire-Louise, went down to part-time working to concentrate on helping her daughter), a good local GP and a sympathetic paediatric consultant. Others have to wait much longer, some up to five years.

A good day, says Rhia-Louise, now 17, was when she managed to make it into class, perhaps not for the register, but in time to manage most of her timetable, despite near-constant migraines and the pains in her joints that are dulled by the 11 different sets of pills. And on a bad day?

“My legs would just give way under me and I’d be on the floor and tearful. That’s when I couldn’t even get out of bed.”

She describes it all without a trace of self-pity. Indeed, she is telling me such details only because I’ve asked. She is taking A-levels at Hazeley – a mark, her mother says, of how flexible and encouraging the school has been.

But Rhia-Louise is one of the lucky ones, says Mary-Jane Willows, chief executive of Ayme (Association of Young People with ME). Without a formal diagnosis, other schools can refuse to see prolonged absences “as anything but truanting. Some blame the parents and call in social services.”

Rhia-Louise shakes her head as she listens to what others go through. Warm, articulate and smartly turned out, it wouldn’t cross your mind as she talks that there is anything amiss.

That’s part of the problem, says Cath Kitchen, acting head teacher for Hospital and Outreach Education in Northamptonshire, a specialist support facility for youngsters whose education is being affected by health problems.

“There is a disbelief around ME. If a pupil looks fine, the school assumes they are fine.”

Read more: http://www.telegraph.co.uk/educatio...r-looks-fine-the-school-assumes-they-are.html

 

[Firestormm]

Good and fairly long article. Nice to see some solid reporting of late

 

[taniaaust1]

Its heartening to see some very good articles about things out in the media of late.

 

[Sean]

The wheel is turning.

Though, and without being ungrateful, what is the DT's track record on this stuff previously? Were they one of those kicking us in the past?

 

[Sasha]

Thanks, @Firestormm.

I just posted this comment:

Thank you for this excellent coverage of this devasting disease. The UK government, like most national governments, has spent almost nothing on biomedical research into it, leaving thousands of children severely disabled.

Some will never recover, will be unable to complete their schooling, will never be able to go to college or have a job or career, or have a chance to marry and have a family.

Many of us have been bedbound or housebound for decades. Please help to make sure that we don't lose another generation to this terrible illness and help fund biomedical research.

Please donate to research. Patients are now successfully crowdfunding individual projects by world-leaders in their fields. Please help!

http://www.ukrituximabtrial.org/

www.microbediscovery.org

http://cfsresearchcenter.org/


I donate every month, whatever I can afford. Please join me and other patients around the world.​

We should be doing this every time we see one of these articles. The Telegraph is (as UK people will know) a major national newspaper and an influential one.

We need to be always reaching out to PWME who aren't aware that there's biomedical research to fund. I think that there's an enormous lack of awareness. It's rare that I tell strangers that I have ME but when I've done so, it almost always happens that they know someone who's got it - very badly - and they get excited when I tell them that there are charities doing biomedical research.

We should be constantly recruiting new donors.

 

[Sasha]

The wheel is turning.

Though, and without being ungrateful, what is the DT's track record on this stuff previously? Were they one of those kicking us in the past?

I don't think newspapers have memories in that way. I don't think the editors care about ME one way or the other - they just want to sell their papers and if a journo has written a good story, whatever it's pitch, I think they'll print it.

I could be wrong but I don't know that it makes much sense to think of papers as though they're people who hold a consistent view and who we can view as being for or against us.

 

[Firestormm]

The wheel is turning.

Though, and without being ungrateful, what is the DT's track record on this stuff previously? Were they one of those kicking us in the past?

Embedded in the article are a couple of previous ones you might like to refamiliarise yourself with:

Related Articles
'ME has turned my life upside down' 05 May 2014
Emily didn’t 'only’ have ME 23 Jun 2013
ME isn’t 'all in the mind’, but it’s still a mystery 26 Nov 2012
Simple £13 test 'could be used to diagnose patients with ME' 29 May 2009

 

[taniaaust1]

Thanks, @Firestormm.

I just posted this comment:

Thank you for this excellent coverage of this devasting disease. The UK government, like most national governments, has spent almost nothing on biomedical research into it, leaving thousands of children severely disabled.

Some will never recover, will be unable to complete their schooling, will never be able to go to college or have a job or career, or have a chance to marry and have a family.

Many of us have been bedbound or housebound for decades. Please help to make sure that we don't lose another generation to this terrible illness and help fund biomedical research.

Please donate to research. Patients are now successfully crowdfunding individual projects by world-leaders in their fields. Please help!

http://www.ukrituximabtrial.org/

www.microbediscovery.org

http://cfsresearchcenter.org/


I donate every month, whatever I can afford. Please join me and other patients around the world.​

We should be doing this every time we see one of these articles. The Telegraph is (as UK people will know) a major national newspaper and an influential one.

We need to be always reaching out to PWME who aren't aware that there's biomedical research to fund. I think that there's an enormous lack of awareness. It's rare that I tell strangers that I have ME but when I've done so, it almost always happens that they know someone who's got it - very badly - and they get excited when I tell them that there are charities doing biomedical research.

We should be constantly recruiting new donors.

Great thinking Sasha. Ive never thought of helping get money towards our research in this way before. I'll be doing this in future. Do the typical newspapers all about the place thou allow links to be posted in their responses? (Im wondering if that will stop replies being posted in many places??)

 

[taniaaust1]

They are getting some of the typical kind of bad comments for that article

"
Manipulative b*ll@cks. 'ME' and 'CFS' are both deep seated psychiatric, not physical disorders. Like anorexia and bulimia. Telling that the vast majority of those afflicted are white, British and female. 50% of GPs refuse to 'diagnose' it because they know it is nonsense, not because they are ignorant, stubborn or just perverse. The other 50% have been worn down by the sheer energy and messianic fervour of the ME/CFS lobby. Ironic that when it comes to defending 'the cause', these people have no shortage of energy. Repeating the mantra that it is a physical - and therefore respectable - 'diagnosis' does not make it true. It is high time this modern, fashionable canard was put to bed (!)
"

 

[taniaaust1]

I'll put my response in to that article and in response to that bad posters comment.

"
120176A's post shows just how shocking the ignorance surrounding this illness is. This illness has even killed people from its complications.

Some of us with this are so very sick, in my case I get over 90 different symptoms with it and to go shopping I have to be pushed in a wheelchair before this I'd often end up on supermarket floors. Its severely affected by autonomic system so my body cant even properly control my BP and heart rate. I get infections, rashes (Ive just been dealing with thrush over my torso for the past 6 week, my body is as run down as an AIDS patients gets) and other things due to this illness. This illness due to the IBS-C it gave me, ended up prolapsing my bowel. Its completely destroying my body with its complications.

Im physically unable to do much at all, Im too ill to even cook most of my meals. Making a roast can be enough to make me collapse and end up in hospital. Ive actually had to be ambulanced to hospital twice in only the past month after Ive collapsed cause Id did to much (the simplisest of things).. in hospital they usually have to give me two bags of saline IV (many with this illness have low blood volume with it). This illness has even started to affect my kidneys according to my blood test results making hospital doctors start to worry about that..

Yet we have those like that other poster, who think this illness is in our heads! Extremely sick ME patients not being able to get treatment and coming across those with this attitude, have been driven to suicide due to this. We can often look well at times but many of us can go from looking well to being so sick we are in hospital in a very short time after we try to do simple every day activities due to the post exertional symptoms (not just tiredness!) which occur. It has been found that ME patients can be as sick as those with AIDS two weeks before death, as sick as congestive heart failure patients and several other serious illnesses. Someone with severe diabetes or severe asthma can look fine too till they have an attack. People really need to stop judging others health based on how they look.

As another replier said. Please donate towards our biomedical research so more can be known about this illness and people like myself can be better helped. Most research has been psychological which has looked more at those just having fatigue and much biophysical research needs to be done on those who are very sick with this illness. You could actually save a life.

You could actually save a life.
http://www.ukrituximabtrial.or...
www.microbediscovery.org
http://cfsresearchcenter.org/
"

 

[alex3619]

I don't see the comments section on this article. Where do I click?

PS Never mind. Its just darn slow to come up. I mean really slow. It took several minutes for some reason.

 

[alex3619]

Just posted this:

On this illness being psychosomatic, not one single psychosomatic illness has ever been proven to exist. These are invented categories. Categories like tuberculosis, diabetes, rheumatoid arthritis, MS, autism, gastric ulcers and lupus. There is now extensive, diverse and replicated hard evidence of severe pathophysiology in ME, strictly defined CFS (CCC), fibro and IBS. MCS is proving more elusive, though there is considerable evidence even there.

In the case of ME nearly all symptoms are now closely associated with severe pathophysiology. Energy crashes, cognitive dysfunction, cardiac abnormalities, autonomic issues .... all measured and measurable.

For ME and strictly defined CFS (CCC) it now turns out there has been an obvious test for the primary pathophysiology since 1949. Look up the Workwell Foundation, formerly Pacific Fatigue Labs. In April this year the anticipated independent replication was published. The test is the 2 day CPET, Cardio Pulmonary Exercise Test. It has to be repeated to show the primary pathophysiology, which is a massive crash in energy production, though a single CPET test will show abnormalities on day one in over half the patients.

The result in ME is so extreme from the 2 day CPET that so far two research teams had initially been convinced the machinery was broken or miscalibrated. This test not only shows severe disability, which cannot be disputed and with which patients are winning court cases, but may be diagnostic of ME itself. No other known disease has this pattern.

So much for "all in your head".

So the question is, how did the entire global medical profession miss this? Why, after 65 years, are the vast majority of doctors still unaware of this? There is colossal failure here, and we need to understand why this happened.

 

[alex3619]

Someone claimed there are dozens of psychosomatic illnesses, so wrote:

There are thousands of papers. Many published in major journals. To anyone claiming ANY are proven, I have a challenge. NAME ONE paper that does this. I have been back to the 1860s, and am still looking. NOT ONE PAPER. Its a purely speculative category, for which they have been criticized since the 1880s by doctors and scientists, and the criticism continues.

Are you aware of what APA (DSM) validation consists of? Its not scientific validation. Its usually diagnostic consistency validation, and usually not published. Just because a disease category exists, does not mean the disease exists.

Those who make these claims have diagnosed probably hundreds of different diseases as psychosomatic. This includes many rare genetic disorders we are still learning about. It also includes tuberculosis, diabetes, gastric ulcers, rheumatoid arthritis, lupus, and a huge list I keep forgetting. Were any of those right? How about the multiple published logical fallacies in the diagnostic process used?

Allergies in particular have a specific, testable, well validated and investigated basis. Claiming otherwise is ignoring half a century of science.

 

[Chickadee9]

I don't know whether people on here are aware that the younger of the 2 brothers who own the DT has had ME for many years. Whether this has anything to do with their coverage I've no idea. Just an interesting fact I picked up from a search. Others on here may know more.

 

[Sasha]

Great thinking Sasha. Ive never thought of helping get money towards our research in this way before. I'll be doing this in future. Do the typical newspapers all about the place thou allow links to be posted in their responses? (Im wondering if that will stop replies being posted in many places??)

I was surprised they let my message through with three links in it! I don't think it was even held in moderation.

I've posted quite a few messages like this on various newspaper's sites over the years and usually the messages post without any problem. If they don't go through, I write a version that mentions a particular project or charity by its exact title and ask people to google for it.

 

[Sasha]

Just broken my own rule and posted a response to that guy. Probably just feeding the troll.

I don't usually bother to reply to this sort of thing but it's not acceptable to make up facts and try to use them to attack patients suffering from a devastating disease.

You say, 120176A , that "'ME' and 'CFS' are both deep seated psychiatric, not physical disorders" and that it's "telling that the vast majority of those afflicted are white, British and female".

ME is defined by the WHO as a neuroimmune disease, not a psychiatric disease. The vast majority of those affected are not white. You need to educate yourself on the epidemiology of this disease. The vast majority of people with the disease are not British. An estimated 250,000 people in the UK have an ME/CFS diagnosis; the estimate for the US (where the socialised medical that you seem to think encourages illness doesn't exist) is 1 million. The estimate of worldwide prevalence is approx. 17 million.

You are correct that the majority (approx. 2:1) of patients are female. You seem to be saying that any disease that affects mostly women is likely to be psychiatric. If you are medically qualified as you claim, you should be aware that autoimmune diseases affect women disproportionately. There is strong evidence from the Haukeland Rituximab study and other work that ME may well be an autoimmune condition.

Prof. Jonathon Edwards, who discovered the role of B-cells in rheumatoid arthritis, is clinical adviser for the upcoming UK rituximab trial: I suggest that you look to his discussion of ME as a probable autoimmune disease.

Dr Ian Lipkin, the world's most famous virus-hunter, is engaged in a hunt for pathogens in ME. He is in no doubt that this is not a psychiatric disorder.

Dr Ronald W. Davis, world-famous for his genetic work, has a son who is very severely affected by ME and is working to research its cause.

I cannot understand the kind of mind that likes to taunt and disparage the severely disabled and who seems to want to encourage others to despise them. This is particularly concerning in someone who claims to be a doctor.

I'd like to repeat to my fellow patients: the way out of this appalling situation is biomedical research. Please donate to those charities that focus on it. You can donate to any or all three of the research projects I mention above at:

http://www.ukrituximabtrial.org/

www.microbediscovery.org

http://cfsresearchcenter.org/​

I think it's important to remember that this guy's opinion is of absolutely no interest: he's not going to change his mind. We're addressing the reasonable people in the audience who can be reached by reason and evidence.

And don't forget, we want to ask them to donate to biomedical research (thanks, Tania!). I really do think we need to keep pushing that. This article is a recruiting ground.

​

 

[alex3619]

I think it's important to remember that this guy's opinion is of absolutely no interest: he's not going to change his mind. We're addressing the reasonable people in the audience who can be reached by reason and evidence.

And don't forget, we want to ask them to donate to biomedical research (thanks, Tania!). I really do think we need to keep pushing that. This article is a recruiting ground.

That is in part why he claims he is posting ... to reach non-ME patients. I agree all we can do is present more accurate information, so that reasonable people can make up their own mind. There are always some who are unreasonable, but we cannot do anything about that.

 

[Sasha]

That is in part why he claims he is posting ... to reach non-ME patients. I agree all we can do is present more accurate information, so that reasonable people can make up their own mind. There are always some who are unreasonable, but we cannot do anything about that.

I think that anyone reasonable can make their own mind up by the information that both sides are presenting and by the attitudes of the people posting. I don't think he's doing himself any favours: hatred, lack of compassion, and a contempt for others are not attractive qualities.

 

[N.A.Wright]

You are correct that the majority (approx. 2:1) of patients are female. You seem to be saying that any disease that affects mostly women is likely to be psychiatric. If you are medically qualified as you claim, you should be aware that autoimmune diseases affect women disproportionately. There is strong evidence from the Haukeland Rituximab study and other work that ME may well be an autoimmune condition.

Minor issue - and not actually in contradiction of what you wrote - but there are autoimmune diseases in which the gender differential is the other way around - including:

• Ankylosing spondylitis

• Psoriasis

• Type 1 diabetes

• Wegener's granulomatosis

Of those conditions where women are most affected, some of the ratios are very significant - http://www.aarda.org/autoimmune-information/autoimmune-disease-in-women/ Across the US population (others may differ significantly) the overall female/male balance appears to be around 8:5 - i.e 1 in 12 women and 1 in 20 men will have automimmunity at some point in their lives. http://www.webmd.com/rheumatoid-arthritis/news/20110110/1-in-12-women-will-have-autoimmune-disease . Because Type 1 Diabetes and Psoriasis are early onset, it may be that in terms of total years of health impairment/disability that there's actually a greater level of concordance between the genders but that's a moot point. As far as ME/CFS is concerned the one area of difficulty is that we really do not have adequate epidemiology to allow an understanding of what the gender differential actually is across large populations.

 

[alex3619]

I have seen a gender bias in ME of 1:2 to 1:4 in different places. Yet I have also seen a suggestion that men are more likely to get other diagnoses. In teens I think its much close to 1:1, does anyone have any more specific information? Yet the trend across all studies in adults is clear: lots more women than men. So we can debate the exact ratio but not much more than that. Its interesting that funding for serious epidemiological studies has been requested since the 1980s, by Komoroff at least, and yet there were never funded. Instead we got the CDC surveillance studies.