ME awareness week UK news articles .

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I suspect the journalist is a reguar visitor to PR. Wonder if she ought to credit Phoenix Rising in some way? Well, at least she did not do an Adam Bouton and allow personal prejudice to interfere with her journalism, or make reference to the Gee-Hadists remark! On the other hand, as always, the Guardian, manages to make us look bad, bad, sad, mad.
 

Marco

Grrrrrrr!
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So the WPI findings rocked the ME community and the scientific world. They certainly didn't rock the Guinard who only reported the negative European studies ... and if WPI have now retreated behind the barricades because of the failed studies perhaps she could explain why GlaxoSmithKline and CDC are running with XMRV?

This article is presented as seeking to be objective (some people with CFS do experience difficulties etc etc). In reality its the usual Guinard sMEar job.

The trouble with ME? Trash journalism.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Adam, the journalist is the Guardian's Health Editor, Sarah Boseley, who's been covering ME for years.
It was freelance Guardian journalist, Martin Robbins, who came onto PR a few weeks ago.

Some earlier Boseley pieces, from 2001, in which she claimed:

“Prof Wessely has quit the field – and is not the only professional to have ceased involvement with CFS.”

Except he hasn't.

“There are many who have found themselves vilified and…have joined the ranks of others who have been abused and intimidated for producing research unpopular to powerful special interests.”

The following week, Ms Boseley had written:

“Simon Wessely, of the Department of Psychological Medicine at Guy’s, King’s and St Thomas’s School of Medicine in London, is a former key figure in the study of ME/CFS who has felt the heat and largely backed out of the kitchen.”

Nine years later, he hasn't quit the field and he's still churning out papers and these same tired, old, unsubstantiated claims get hawked by journalists year after year and now we have Spencer and Shepherd doing it too, and I am so angry with Shepherd's MO, today, that I feel like walking away.

"The trouble with ME? Trash journalism."

The trouble with ME? Ineffectual campaigning patient organisations that seek to act as apologists for the MRC's failure to fund quality research studies.

As I've already said, since when has MRC research funding been allocated on the basis of the MRC's perceptions of the patient communities who would benefit from research proposals?

And if the money is there, the researchers will follow.

PD White, Chalder, Moss-Morris, Wearden, Creed, Wessely, Cleare, Sharpe, Powell - they've all been working in the field of CFS and ME research for years, nothing has stopped them from keeping their snouts in the trough.


Do read these Adam, if you haven't already seen them - they are not long pieces:

Storm brews over ‘all in mind’ theory of ME, Guardian 20 September 2001
http://www.guardian.co.uk/uk_news/story/0,3604,554693,00.html

A very modern epidemic, Guardian 27 September 2001
http://education.guardian.co.uk/higher/medicalscience/story/0,,559001,00.html
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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And finally...

Just in...

Dear Ms Chapman

I am e-mailing as promised to let you know that the note and the presentations relating to the research workshop are now available on our website.

The link to the web page is as follows: http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm, and the note can be found at the following link: http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006813.

As agreed I will also let you know once the note of the expert group meeting held in March is also published on the website. I hope you find the note to be helpful.

Sincerely

Rosa Parker
Corporate Information and Policy

 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Links for MRC November 09 CFS/ME Research Workshop

The link for the web MRC page is:

http://www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm

The note can be found at:

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006813


Agenda:
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006511

List of participants of the MRC CFS/ME Research Workshop
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006510

Note of the MRC CFS/ME Research Workshop 19-20 November 2009
http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006813

(including copy of the presentations from the meeting at annex 1)

MRC CFS/ME Research Workshop
Issued:14 May 2010Primary audience:General publicDocument Summary

19 and 20 November 2009, Heythrop Park Hotel, Oxfordshire process and timetable.

http://www.mrc.ac.uk/consumption/id...dID=25991&dDocName=MRC006813&allowInterrupt=1

(3MB PDF) Includes Presentation Slides

(Too large to upload here, so please grab from site. I may convert to text at some point in the future)

Papers circulated prior to the meeting:

http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC006509

CFS/ME Literature review Jan 2004 – June 2009
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9

Suzy Chapman
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Extract Page 1 Note of MRC CFS/ME Research Workshop, November 2009

1.3 Professor Holgate referred to the recent interest in the publication of research linking the retrovirus XMRV to CFS/ME, before going on to summarise the key challenges in the field:

[...]

  • The need to consider both physiological and psychological mechanisms in developing therapeutic approaches.

Is there any point reading any more of this document?
 

Dolphin

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(Not good) South Wales Echo: Article on tiredness which talks about CFS also

One can comment on this online (or even write a letter:
wosmail@mediawales.co.uk wosmail @ mediawales.co.uk with Letters in Subject
line)

Chronic Fatigue Syndrome (ME), at the extreme end of the spectrum, is diagnosed in those patients who constantly suffer with persistent symptoms of low energy, fatigue and exhaustion, where there is no identifiable cause for the symptoms.

In Chronic Fatigue Syndrome, symptoms are severe enough to affect everyday life and many sufferers feel unable to work, or go about their daily activities.

Not a great deal is understood about the condition, although it is thought to be closely linked with depression and poor sleep patterns.

[..]

So what can you do about your low energy levels?

[..]

Take regular exercise. Exercise is widely used to try to help improve symptoms of tiredness, and has been shown in numerous studies to help improve mood and boost energy levels.

In fact, exercise is a clinically-proven beneficial treatment for the management of Chronic Fatigue Syndrome.

Thirty minutes of aerobic exercise, at least three times a week, really can make a big difference.
================

http://tinyurl.com/39rgg27 i.e.
http://www.walesonline.co.uk/showbiz-and-lifestyle/columnists/2010/05/13/hea
lth-matters-simple-steps-will-help-with-those-tired-old-excuses-91466-264377
76/
Home Lifestyle

Columnists

Health Matters: Simple steps will help with those tired old excuses

May 13 2010 Dr Elena Douse

DO you feel exhausted and drained all the time? Do you sometimes feel so tired that you have no energy to do anything?

As we struggle to cope with the pressures and demands of 21st -century living, it's no wonder we're all feeling so exhausted.

Feeling tired all the time (or TATT as we doctors like to abbreviate it) is actually really common, and I frequently see patients in surgery complaining of symptoms of lethargy and low energy.

In most cases, the underlying cause for the tiredness is usually fairly obvious.

For example, if you're working six days a week, looking after three children, have an elderly relative in hospital and aren't sleeping properly due to a snoring partner, it's inevitable that you will soon start feeling exhausted.

Sometimes, however, the cause isn't quite so apparent and your GP will probably suggest a few blood tests to rule out any potential underlying, treatable conditions such as anaemia, diabetes and thyroid problems - all of which can cause symptoms of low energy and lethargy.

Your GP will also be particularly interested in asking you about your mood.
Tiredness is frequently a sign of depression, and you should tell your doctor if you are feeling down and tearful, or if you have lost interest or pleasure in doing things that you would usually enjoy.

We can often feel drained and exhausted following a viral or bacterial infection - for example, after a nasty chest infection or a bad bout of gastroenteritis.

Post Viral Fatigue usually lasts just a few days, but in some cases can persist for weeks following an illness, even if the initial infection has cleared.

Chronic Fatigue Syndrome (ME), at the extreme end of the spectrum, is diagnosed in those patients who constantly suffer with persistent symptoms of low energy, fatigue and exhaustion, where there is no identifiable cause for the symptoms.

In Chronic Fatigue Syndrome, symptoms are severe enough to affect everyday life and many sufferers feel unable to work, or go about their daily activities.

Not a great deal is understood about the condition, although it is thought to be closely linked with depression and poor sleep patterns.

So what can you do about your low energy levels?

Recognising potential causes for your tiredness is important and you should take measures to adapt your lifestyle accordingly:

Realise you may be doing too much and slow down.

Learn to say "No" to people.

Ask for help - from colleagues at work, and from family members at home.

Eat healthily and ensure you have three proper meals a day.

Take time out for yourself - this should be spent relaxing and doing something that you enjoy.

Minimise stress.

Address sleep issues - having a good night's sleep will refresh and revitalise you and make you better able to cope with the demands of the following day.

Take regular exercise. Exercise is widely used to try to help improve symptoms of tiredness, and has been shown in numerous studies to help improve mood and boost energy levels.

In fact, exercise is a clinically-proven beneficial treatment for the management of Chronic Fatigue Syndrome.

Thirty minutes of aerobic exercise, at least three times a week, really can make a big difference.

We're all allowed to have the odd day where we feel we really haven't got the energy to do anything, but if you're feeling like this all the time, maybe it's time for you to visit your GP.
 

Dolphin

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"Keith's call for ME help" (Burntwood Post)

http://www.afme.org.uk/news.asp?newsid=840
Don't ignore M.E.
Keith Bradbury, a member of The 25% Group, calls for more recognition and research into M.E.
Burntwood Post, p.16
13/05/10

----------

http://tinyurl.com/3ylkkep i.e.
http://www.chasepost.net/news-in-ca...5/14/keith-s-call-for-me-help-93633-26446304/

Keith's call for ME help
May 14 2010 Kevin Edge


For Hednesford ME sufferer Keith Bradbury, the challenge of making it through the day without the debilitating illness taking too much of a toll on his body and mind is not his only worry.

While the illness, which can affect any age, sex and ethnic group, afflicts millions of people around the world, its cause is still unknown.

And worse still, for a percentage of the medical profession, the condition - which causes chronic fatigue and can leave suffers housebound and in terrible pain - is not recognised as a biological illness at all.

For the 69-year-old, that lack of recognition is holding back research and leaving thousands of people to suffer without respite. He is now trying to get a properly funded medical research programme into the condition started in the coming year.

"The people affected by ME are calling for properly funded biomedical research into this dreadful illnesses," Keith, who is a member of ME national support group, The 25% Group, said.

"Unbelievably, current research programmes receive no Government funding and are solely reliant upon charitable donations.

"Instead the Government has chosen to pour many millions pounds worth of public money in funding psychologically-based treatments and management strategy therapies which simply do not work for many ME patients, and indeed cause more harm, to ME sufferers, especially those more severely affected."

Former teacher Keith has suffered from the illness for 25 years. He believes his condition can be traced back to a virus he had just prior to the illness manifesting itself.

He said the lack of medical recognition was also causing suffering and confusion for carers of people afficted with ME

"Sufferers' health and care needs are not being met due to lack of knowledge and understanding of this illness and this widespread ignorance is still causing real pain to sufferers and their families on a daily basis," he said.

"This situation is still being caused mainly by the disbelief of some of the members of the medical profession and the general public about this being a real, biological disease affecting the individual in such a devastating way."

Keith pointed to the tragic case of fellow 25% ME member Lynn Gilderdale, who made the news earlier this year when her mother helped in her assisted suicide.

"There is so many tragic cases and we need to do something about it," he said.

"We are frustrated by the lack of recognition. And that is leading to a lack of progress. The medical profession needs to get a funded research programme into the illness."

Keith has lobbied the new Chase MP Aiden Burley about the problem and is also calling on people to lend their support to the campaign for medical recognition at www.25megroup.org.

n This week is national ME Awareness Week.
 

Dolphin

Senior Member
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Piece on t5m.com

http://www.afme.org.uk/news.asp?newsid=840
More awareness
Commenting on how the tragic death of Lynn Gilderdale, who had M.E., and the trial of her mother Kay, has brought M.E. to wider attention.
t5m.com, web
13/05/10
http://thecollectivereview.com/penelope-friday/mecfids-awareness-day.html
-----------

HTTP://THECOLLECTIVEREVIEW.COM/PENELOPE-FRIDAY/MECFIDS-AWARENESS-DAY.HTML

ME/CFIDS AWARENESS DAY
13th May | 0 comments | 2 people like this

Penelope Friday speaks out on ME Awareness Day, Lynn Gilderdale, and the issues with living with ME as a chronic illness.

May 12th is ME/CFIDS Awareness Day. Most years, Ive bemoaned the fact that this is a little known and extremely misunderstood (by those who think they know something about it) illness.

This year, perhaps its not so unknown. The story of Kay Gilderdales acquittal of murdering her daughter Lynn made headline news in the UK. And may, perhaps, have made people realise that ME isnt just feeling a little bit tired all the time as if youve been out a bit too late the night before with a few drinks. Watch now, because Im going to link positively to a Daily Mail post, which is a once in a lifetime event. But Gill Swann, in 2006, interviewed Lynn and Kay and made the limitations on Lynns life clear.

Part of the reason Im mentioning this, though, is because fear that the fact that Lynn Gilderdale had ME actually got THROUGH to the wider public.

Brains took in seriously, horribly ill daughter, helped to die by mother and the details of the illness passed them by. Maybe people who have taken the piss out of ME for being a fashionable illness, yuppie flu or laziness didnt realise that this devastatingly ill woman had the same illness. I know (as a person with ME) that Ive got friends and relatives who didnt make the connection until I pointed it out.

Its ME awareness day. Were not lying. Were not putting it on. We dont have airs to be interesting. Were not benefit scroungers. Were not hysterical. Were really bloody ill. Acknowledge it!
 
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From: Professor Malcom Hooper
To: letters@guardian.co.uk

The Editor

The growing understanding of ME shown in the recent article (The trouble
with ME 14/05/10) by your medical correspondent, Sarah Boseley, is most
welcome. However, there are a number of significant errors and omissions in
the article.

ME is Myalgic Encephalomyelitis, which signifies muscle pain with
inflammation of the brain and spinal cord (inflammation has been shown to
occur, in three recent UK post-mortems) and the disorder has been classified
by the WHO as a neurological disorder since 1969. The correct terminology is
NOT myalgic encephalopathy, which is not classified and is a much less
specific clinical term. The alternative term Chronic Fatigue Syndrome, CFS,
was introduced in 1988. Its use is restricted by the WHO to ICD-10 G93.3 and
excluded from use elsewhere, particularly in somatoform, fatigue, chronic
fatigue, and fatigue syndromes which are classified at F48.0. The
similarities in these words used in F48.0 and in G93.3 have led to much
confusion, and some deception, by those seeking to reclassify ME as a
somatoform disorder.

The identification of people with ME relies on accurate terminology and case
definition which are essential for well designed research studies. The
CDC-Fukuda 1994 definition has been shown to be non-specific, whilst the
1991 Oxford definition developed and favoured by certain influential
psychiatrists who work for the medical insurance industry, excludes
neurological conditions. Studies with such heterogeneous cohorts of patients
cannot provide any meaningful data for interpretation. The current Medical
Research Council PACE Trial on "CFS/ME" is seriously flawed in this way
since it uses the Oxford definition which embraces all states of "medically
unexplained fatigue" but by definition excludes those with ME, a situation
that defies logic.

The 2003 Canadian Criteria were produced by very experienced clinicians who,
between them have diagnosed and treated over 20,000 patients with ME. They
provide comprehensive clinical signs associated with ME, from which any
competent physician should be able to make a diagnosis with the use of
appropriate investigative tests many of which are restricted or proscribed
in the UK by NICE.

Although the recent judicial review did find against the ME plaintiffs, the
decision is the subject of a legal challenge due to the alleged failure of
due legal process.

The undeclared vested interest of doctors associated with insurance
companies was critically exposed in the report by senior Parliamentarians
chaired by Dr Ian Gibson which exposed the severe difficulties experienced
by patients with ME when they seek benefits and support. This is not
conspiracy theory or paranoia but a daily reality for many patients,
families and carers.

Over many years it has been demonstrated that numerous viruses are
associated with ME, the most common being enteroviruses with herpes viruses
(glandular fever etc) coming second.

People do die from the illness (Jason et al. Health Care for Women
International 2006:27:615-626). The tragic story of Sophia Mirza, who died
aged 32 from ME, has been published, together with her medical records.
These demonstrate the ideological commitment of some clinicians to the
somatoform model of the illness and the ignorance and inhumanity of some
members of the medical profession, including sectioning of a very sick woman
and accusations, in this and other cases, of MSBP (Munschausen's syndrome by
proxy) with parents having only limited access to their children or even
banned from any contact.

The offer of only behavioural modification and incremental aerobic exercise
(CBT and GET, upon which the payment of benefits is contingent), which are
management techniques and in no way curative, as allegedly effective
treatments for people with a severe neurological disorder is unethical, and
a betrayal of doctor's Hippocratic oath. Many surveys by ME charities,
including the 25% ME Group for the Severely Affected that represents the
most severely ill have shown that CBT has no lasting value and that GET is
positively harmful. The most severely affected are almost totally excluded
from any research studies since they are housebound or bedbound.

The recent discovery in the US of the retrovirus, XMRV, in ME/CFS patients
emphasises the urgent need for biomedical studies. The acclamation of the
three subsequent studies that failed to find XMRV by those who subscribe to
the behavioural model of ME (which did not attempt to replicate the US
study) serve merely as vehicles to discredit any suggestion that ME/CFS is a
serious organic disease.

Following the demonstrated association of a retrovirus with ME/CFS, the
Canadian and New Zealand governments have banned patients with ME from
serving as blood donors. This accords with the current UK position that
people with ME must refrain from donating blood.

If Sarah Boseley attends the forthcoming Invest in ME conference on 24th May
at 1, Birdcage Walk, Westminster, she will hear international experts
addressing most of the above topics. She will be one of the few medical
journalists who appear willing to listen and learn in order to understand
more fully the complexities of the chronic multi-system illness that is ME.
I look forward to meeting her there.

Malcolm Hooper (Professor)
 
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Suzy's comments on this thread and her analysis of the situation are so right.

To be honest, I dread ME awareness week and the media stories. I dread a quote by the charities or other organisations. I dread first person stories where people recover by pole dancing, or plugs for the 'Chronic Fatigue' units. The reification of all the bullcrap, year after year after year. : (
 
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Oh good grief are the daft CFS clinics going to make us do pole dancing now?

That's a great letter from Malcolm Hooper.

Many thanks to Suzy.
 
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Oh good grief are the daft CFS clinics going to make us do pole dancing now?
Well one girl claimed she was cured by it in a newspaper - so there may well be a research grant for a trial on children before the year is out... (someone give me an emoticon for a rueful grin, please?)
 

IamME

Too sick for an identity
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Thank god for that excellent letter from Prof Hooper, as that was quite a slyly terrible piece of hackwork in the Gaurdian calculated to leave the reader with a taste that needs quickly washed away. Some googling on XMRV, a few soundbites either steered or offered on 'orrible sufferers with their conspiracy theory lunacy and "radicalised" terrorism driving away the masses of biomedical interest, and a big juicy bit of establishment PR. The only good thing about awareness day this year was it was overshadowed by a bigger farce in the election.
 
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Agree Prof Hooper's letter is excellent. I am still unclear as to whether the Gueardian published his response or if he has posted it on-line. Would be fantastic for it to be in the Guardian.
-------------------------
Not sure if this has been posted yet:

Charles Shepherd to CO-CURE today

Magazine article from the UK intended for ME Awareness Week:

ME: What's the latest?


Much of ME or chronic fatigue syndrome is a mystery in the medical world and some GPs still dont even recognise it as a condition. Our top expert brings us the newest facts.

Mention ME or chronic fatigue syndrome (CFS) to a group of doctors and theyll probably disagree on everything from what it is, what to call it, what causes and triggers it and how to treat it. And although most GPs now acknowledge it exists, around a fifth still dismiss it as all in the mind. This is despite the fact the World Health Organisation has viewed it as a genuine, debilitating neurological condition for 20 years.
Severe ME or CFS can totally destroy someones quality of life. For example, earlier this year, the court case of ex-nurse Kay Gilderdale hit the headlines. She admitted aiding and abetting the suicide of her daughter whod suffered from ME for 17 years, enduring constant pain and needing 24-hour care. Towards the end, she couldnt walk, talk or even drink.
Although most ME/CFS patients will improve over a period of time only a small minority fully recover and return to previous health levels. Most will go through periods of relapse and remission.
Some 240,000 people in the UK suffer from the condition which is now commonly known as ME/CFS. Patients dislike the term chronic fatigue syndrome as it fails to reflect the symptoms or the severity of the illness. Doctors prefer CFS because myalgic encephalomyelitis (ME) implies brain and spinal inflammation, which hasnt been proven either. ME/CFS is the compromise.

Physically draining
ME/CFS describes a whole host of symptoms that follow an infection such as chicken pox, flu or gastroenteritis. Weeks after the infection has gone, sufferers are often still totally physically exhausted like theyre operating at about 60 per cent of the real them. A simple walk to the local shops can leave them flat out: they might struggle to find the right words, be unable to concentrate and suffer memory lapses too. They also feel fluey, have sore throats and muscle pain, can have problems with balance and may become intolerant to alcohol.
This can go on for several years, or longer. Most people go through ups and downs, stabilise for a while, then relapse. But around a quarter, such as Kay Gilderdales daughter, are so severely affected that they become wheelchair bound, house bound and bed bound.
Most people develop ME/CFS in their 20s, 30s or 40s and have had no particular health problems before. Its twice as common in women than men were not sure why, but we know that people affected severely with the condition are more likely to have a mother with ME/CFS. Maybe the genetic link explains this. Some people who are exposed to a viral infection are more likely to develop an illness and this susceptibility may be passed on
Being under stress when youve got an infection may also trigger ME/CFS symptoms. Athletes have been known to get it when theyre under physical stress.
Children can develop it too in fact, its one of the most common causes of long-term school absence among teenagers. However, they are more likely than adults to recover and return to a normal active life.

Could a virus be the cause?
This is still a matter of huge debate. US scientists have found a link between CFS/ME and a virus called XMRV which was discovered in 67 per cent of ME patients compared to under 4 per cent of the population. But a more recent British study couldnt replicate these results. If further research finds that this virus is causing the disease, we may start trials on anti-viral drugs and diagnostic tests.
Despite this emerging evidence of a persisting virus, the current most popular explanation for ME/CFS is that the immune system fails to switch off after an infection. So someone gets an infection, their immune system swings into action and produces chemicals called cytokines that make anyone with normal flu feel awful. The idea is that when the infection has gone, the immune system keeps going, still making these cytokines.
About three quarters of cases are straightforward to diagnose. A typical case is someone whos used to being well and wants to go back to work, but has been suffering post-viral symptoms for weeks or months. A doctor will carry out routine blood tests such as thyroid, kidney, and liver function tests. If the results come back okay and there are no red flag signs of another illness, such as coughing up blood or swollen joints, then a diagnosis of ME/CFS can be made. In some cases, patients might be referred to a specialist to rule out other conditions, such as multiple sclerosis.
Early diagnosis offers the best hope of recovery only then can sufferers start managing symptoms. Of course, this depends on how long it takes for your doctor to make an accurate diagnosis some doctors may put symptoms down to post flu flop, encouraging you to just get on with things. This wont help your body is telling you to slow down.
Symptoms can get worse by not accepting theres a problem when people go back to work and try to exercise their way out of it.

Managing symptoms
With no known cause, theres obviously no easy cure so its normally a matter of treating individual symptoms. Drugs are often prescribed to treat muscle pain, sleep disturbance or depression. If sleep is a problem, also make sure you go to bed and wake up at the same time every day and relax rather than sleep in the day.
On top of the physical symptoms, it can be incredibly stressful living with ME/CFS dealing with doctors who dont believe you, fighting for benefits, having a difficult employer or unsympathetic family, for instance. A counsellor can help you work through these issues your GP can refer you to one, or visit the ME Association website, below.
The key to managing ME/CFS, however, is getting the correct balance between activity and rest. This approach, known as pacing, has been found the most helpful life change for many ME/CFS sufferers. This idea is that you split the day into periods of rest, mental activity and physical activity. Gradually over time you build up the mental and physical activity. Its important to get the balance right staying in bed all day or exercising hard may slow recovery or trigger relapse.
As soon as you get a diagnosis, pay particular attention to your diet a healthy, balanced diet is important to keep up energy levels. Its common for ME/CFS sufferers to get irritable bowel syndrome (IBS) and they can become intolerant to certain foods. But before starting exclusion diets, talk to your GP.
Natural therapies can be effective for many people.

For more information and support, log on to www.meassociation.org.uk and Action for MEs website www.afme.org.uk. You could also try the ME Connect Helpline on 0844 576 5326.

Natural helpers
Many ME/CFS sufferers turn to alternative medicine because conventional medicine hasnt got the answers. Alternative therapies can help relieve symptoms but beware of practitioners promising a miracle cure. There isnt one! For pain relief, some people find acupuncture or TENS machines helpful. Theres also evidence that supplements might be helpful:
-Carnitine may help reduce fatigue.
- St Johns Wort may help mild to moderate depression.
-Fish oil/EPO has been shown to help brain function in studies.
-Findings in the Journal of Psychosomatic Research found that homeopathy may help relieve fatigue in ME/CFS patients. Some homeopaths are medically qualified doctors too, so will know about when to use homeopathic medicine alone and when to use them with conventional medicines.

Chocolate therapy
It seems too good to be true but a study at Hull and York Medical School found that ME sufferers were less tired after eating a small amount of dark chocolate (45g) every day. The idea is that polyphenols in chocolate boost serotonin levels in the brain, which help regulate mood and sleep.

The expert: Dr. Charles Shepherd

Dr. Charles Shepherd works in private practice and is medical adviser to the ME Association. He has lived with ME for 30 years.

Compiled: Karen Williamson
 
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Extract Page 1 Note of MRC CFS/ME Research Workshop, November 2009

1.3 Professor Holgate referred to the recent interest in the publication of research linking the retrovirus XMRV to CFS/ME, before going on to summarise the key challenges in the field:

[...]

  • The need to consider both physiological and psychological mechanisms in developing therapeutic approaches.

Is there any point reading any more of this document?
I guess not Suzy. ;)
 
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...sufferers are often still totally physically exhausted like they’re operating at about 60 per cent of the ‘real’ them. A simple walk to the local shops can leave them flat out:
Damn it, Dr. Sheppard, tell me who went and stole my 50%?

And why aren't there shops within 50 yards off where I live so I can go buy my 45 grams of Cadbury's so I could be well again?
 

garcia

Aristocrat Extraordinaire
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Damn it, Dr. Sheppard, tell me who went and stole my 50%?

And why aren't there shops within 50 yards off where I live so I can go buy my 45 grams of Cadbury's so I could be well again?
I think with that kind of advice Shepherd should go back to looking after sheep!