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ME Attack

Linda Crowhurst
ME Attack by Linda Crowhurst
                                           Let us be clear there is real injustice going on with ME.
The Psychiatric lobby have high jacked the name "ME" and filled it full of fatigue patients whilst alienating those of us with a genuine neurological disease and leaving us without any viable health care service.
When is the nation going to awaken to this great con ?
When are they going to see that the wool has been deliberately pulled over their eyes ? So they cannot see the injustice and abuse and neglect going on in the name of ME.
It is time to make a stand and speak up loudly until we are seen and heard.
We have to be seen and heard because failure will mean more deaths.
ME Attack
I do not want my ME to define me
So I try to define it
to clarify it
to demistify it
to explain it
so others understand
the intensity, complexity and 
torment of symptoms I experience
so I can be free from it
Despite being trapped in it
It is hard enough to bear the constant
torment of symptoms,
the never-ending
physical suffering
Yet harder still to bear
is the ignorance, the denial,
the downplaying of it all,
the almost complete lack of empathy
from others
The complete lack of understanding
of people , professionals, systems,
that negate and fail me
because they simply do not
comprehend my reality..even still,
17 years on.
Linda Crowhurst 
28th March 2011 

Not "reassurance " but proper respect and treatment !!

It is not "reassurance " that is required,  but proper respect and treatment !!
Greg Crowhurst
27th March 2011

Permission to Repost

Myalgic Encephalomyelitis , is a serious biomedical disorder; only those in the final stages of terminal cancer or dying of AIDS can possibly know what it is like to experience the level of sickness that a severe ME patient has to endure for years, often decades on end .There is simply  nothing more devastating then, than  for a sufferer  to be shoddily dismissed by a Neurologist , as my wife was once, as "just needing reassurance". 


I am so angry that this  is still happening to  friends. I know the depths of despair that this rejection  engenders; far worse, I can tell you,  than any slap to the face ! It is grossly unethical.  


The fact is,   any Neurologist who dismisses ME as a psychiatric condition ,  is potentially in  breach of the GMC regulations, concerning  the legal requirement for doctors to keep up to date with developments in medicine and medical science (as clearly set out in “Good Medical Practice: Duties of a doctor. The duties of a doctor registered with the General Medical Council: 'Keep your professional knowledge and skills up to date' and 'Never abuse your patients' trust in you or the public's trust in the profession' (http://www.gmcuk.org/guidance/good_medical_practice/duties_of_a_doctor.asp). Hooper 2010


(Malcolm Hooper : http://www.meactionuk.org.uk/Hooper-signed-letter-to-Rawlins.htm)




The UK Chief Medical Officer is on record stating that the Department of Health recognises ME/CFS as a genuine and disabling neurological condition and that health professionals  must recognise it as such. Indeed Sir Liam Donaldson stated on  BBC News 11 January 2002 that ME should be classed as a chronic condition with long term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease”


 Given the   vast amount of biomedical literature (some 5000 papers) going back to 1934 and the fact that ME  was classified as a neurological illness by the WHO (ICD-10 G93.3) in  1969 , was recognised as a specific disease entity by The Royal Society of Medicine in 1978 , was recognised as an organic disease by the Department of Health in November 1987 ; any neurologist who ignores this is not keeping up to date.


 Any registered medical practitioner – consultant or GP who chooses  to dismiss or ignore the widely available biomedical evidence , is in clear breach of the GMC regulations and this consequently raises issues of medical indemnity.

As Margaret Williams states : "By letter dated 25th November 2008, the Northern Ireland Minister for Health, Social Services and Public Safety, Michael McGimpsey MLA, confirmed:

“I know that in the past there has been some debate about the nature of ME but there have been a number of studies and reports in recent years clarifying that it is a very real and debilitating neurological condition”.

On 23rd February 2010, in an Adjournment debate on ME, Gillian Merron, Minister of State (Public Health), Department of Health, stated:

“I want first to put on the record that we accept the World Health Organisation’s classification of ME as a neurological condition of unknown cause”.


By letter dated 28th May 2010, Kay Ellis confirmed on behalf of the UK Chief Medical Officer:

“The Department’s view is that it is important to recognise that CFS/ME is a genuine and disabling neurological illness and health professionals must recognise it as such”.

On 11th October 2010, in a debate on ME in the House of Lords, the Countess of Mar asked the noble Earl whether the coalition continues to accept that myalgic encephalomyelitis is a neurological illness as categorised by ICD-10 G93.3?”.

The noble Earl, the Parliamentary Under Secretary of State for Health, (Earl Howe) replied concisely:

“The noble Countess, Lady Mar, asked whether the coalition accepts that CFS/ME is a neurological condition. The Government accepts that it is a neurological condition”.


By letter dated 19th June 2008, Stephen Atkinson on behalf of the Department of Health confirmed:“I would like to assure you that the Department recognises CFS/ME as a neurological disease”.


(Evidence that the official UK position is that ME/CFS (or CFS/ME) is a neurological disorder
by Margaret Williams http://www.investinme.org/Article-704%20UK-Government%20Position%20on%20ME.htm)



Very recently, on Feb 2nd 2011 Paul Burstow,  Minister of State, Department of Health, in response to Ian Swales MP,  confirmed that there is :

"strong international consensus that CFS/ME is a chronic and disabling neurological illness. I want to stress that it is a neurological illness; it is not a mental health problem. " 




(Transcript of this week’s Parliamentary debate on ME
by tonybrittonhttp://www.meassociation.org.uk/?p=4264)



In what other neurological disease would psychiatric interventions, designed to convince the patient there is nothing wrong with them, be advocated as first-line / core treatments ? The list of documented neurological abnormalities in ME is long and shocking : please see Malcolm Hooper's Biomedical overview  : http://hoopermedical.intodit.com/page/documented-neurological-abnormalities-in-me-cfs.

If a neurologist or any other medical professional dismisses  you, stating that you simply  need "reassurance" or that you need to heal some underlying emotional  issue , perhaps it is time to remind them of the facts : and then demand proper respect and treatment  !!







Breakthrough Prayer 9pm GMT Saturday 26th March 2011


March 26th 2011
London march against the cuts today.
We pray today for wisdom, integrity and openness to change; that the Government will see the extent of dissatisfaction about the level of cuts it is making.

We pray that they will hear the people's voice and not carry on the punative measures that will affect so many people of all ages and groups, especially the disabled and the sick,particularly people with ME.

We pray that all is held in the Heart of Love where miracles happen and joy is complete. We place our trust in God's goodness and the power of prayer to change hearts and minds.

We pray for a peaceful demonstration today, where the voice of the people is justly heard and answered.


Lord I cling to you in my need
 Keep me safe and help me to know
 that in you all will be well.

Friday afternoon

Friday afternoon
I am screaming
My body is screaming
at me.
Throbbing intolerably
many sensations assault
my sense of time and
place.
My body is expanding
and contracting on some
unseen invisible level
invisible to the world
Totally clear to me
My vision is moving in fact
I have a sense of
motion when still
My eyes are expanding
and contracting along with
everything else
Leaving me giddy and
out of gear with reality
I cannot bear this anymore
I cannot bear this right
now
I am screaming Who will
hear ?
Linda Crowhurst
25th March 2011

You decide.....



"She shouldn't have had to go through this for this length of time, she should have the right to end her life if she chooses, I know it isn't right, but is it right for someone to suffer like this for this long??? You decide....."

Someone posted this comment  in relation to our YouTube video :




Yesterday Linda  told me how the pain seems to stretch to about 4 inches outside her body. Her reality is  horrific , utterly tormenting; Linda lives in intense suffering; the  commentator is right.


....but kill herself ??


We sit together, Linda and I, her in her suffering , me in my inability to take away the pain and my struggling to think what to do , after sitting beside her for  18 years of ever-deepening , throbbing agony.


And maybe we notice a daffodil, or a bud . Often a bird, the robin, the hilarious blue-tits.


Or maybe a neighbour starts  sweeping their path, a child gets out a ball and Linda's symptoms go into overdrive, the peace is shattered and there is no shelter; getting harder and harder  to find refuge from an increasingly hostile world. Who has a clue, I wonder,  what a torture sound sensitivity is to the Severe ME Sufferer ??? And the day collapses..


Still we live our life. We believe passionately in the mystery we are caught up in, so vast, so radiant. Linda has learned how to live in the spaces between the raging symptoms, I have learned something about acceptance and something of the Heart of Love. It is prayer that liberates us and love that guides us.


In any one moment you can choose despair, or you can choose life. We choose life. You can live life in fear and negativity or you can live life to the full.


In the moment, could anyone take more delight in the  beauty of a daffodil than we do ? In a life-time you could never , never drink it in.  Our journey has brought us here.


Where we fight with a passion any suggestion of euthanasia; the death-making culture  that dominates  the history of disability and is gaining extraordinary ground these days.  Where we care enormously  about what is going on. Where we choose to take a stand, especially  for the truth of ME. That is why the videos are up there.


Me; I have never felt more alive.


Or more angry. With every fiber of my being I fight for a cure for  Linda, up  against all the injustice, the institutional prejudice, the outrageous  clinical vacuum.


Her , me and the daffodils ;  perfect.


When I was growing up there was a song that  I have carried with me all this time.  A few years ago I brought a battered, stained,  framed copy of the words at a market stall :


You are a child of the universe, no less than the trees and
          the stars; you have a right to be here.
                                                                     - Desiderata   

























Breakthrough Prayer 9pm GMT Saturday 19th January 2011

March 19th 2011
Japan, Libya, Bahrain
As we pray tonight for peace, healing and comfort around the world; the mysteries of Light bring us much needed radiance in the darkness, wisdom in the void, truth in the uncertainty of living in a damaged and hurting world.

The Mysteries of Light are the Perfect companion for our Lent journey, as they bring a much needed focus to the emptiness of the desert. They help us focus our attention on Jesus’ ministry, as it builds up to the climax of Easter week.

They begin by bringing awareness of the very real presence of the Trinity ,to our attention, in the first mystery, moving on to the wonder of Jesus mission:the transforming power of love where miracles are seen and believed through the miracle of the water into wine.

Following on from the miraculous, we come to a much needed emphasis on forgiveness, reconciliation and mercy in the third mystery of Light: the main focus of Jesus Life ultimately, to bring mercy and lead us back to God, the Father, who is Love.

Moving on we come to the fourth and awesome mystery of the Transfiguration: the most powerful and wonderful transformative truth, illuminated so clearly for us through the experience of Peter, James and John; those closest to Jesus. Here we can ask that we too may be blessed in a similar way to the disciples; to grow closer in our own discipleship; to see the pure light of life , radiant in all His beauty .We can then ask to see the same truth in all our neighbours, even in our enemies: the light of life that links , unites, heals, brings hope for the world.

The fifth mystery is the mystery of the Eucharist. The purity of God’s love radiates out calling us to receive,to be fed, sustained by the essence of Light itself,manifest in the bread of Love. This is the holy gift given to us, which remains with us, which unites and strengthens us and brings us ever closer to the awareness of the living God within us. As we contemplate the true presence here within ,may we grow in holiness and carry all the gifts of the Mysteries of Light with us out into the world in the Power of the Holy Spirit.

All these mysteries are brought together on the Cross on Good Friday, but are illuminated powerfully and individually through contemplating the Mysteries of Light.

As we contemplate ,so we are lead more and more into the depths of Jesus Ministry and mission. As we pray and ask for Light to shine more brightly in our hearts and minds,so it manifests more in our lives, bringing untold blessings to what can sometimes feel like a tedious and dark journey towards the Cross, through Lent.

How can we not rejoice in the Mysteries of Light ? How can we not use them as a powerful gift of intercession for ourselves , for each other, indeed for the whole world, this Lent and always. Amen.

We pray especially tonight for Pauline , co-author of the Breakthrough Prayer, whose funeral is this week :

Lord may we find
every hope
in all
that You have 
promised :
that even in death
we shall still live
in You
Amen

Response to Irish Medical Times

Response to Irish Medical Times

Cognitive behavioural therapy not harmful in chronic fatigue


The PACE Trial had nothing to do with ME . ME is a WHO classified neurological disease (ICD -10-G93.3). Page 188 of the PACE Trial Protocol states that neurological disturbances “are not necessary to make the diagnosis” . The Oxford criteria upon which the PACE and FINE trials were based specifically excludes those with neurological disorders.
The PACE Trial conflated two diseases that the WHO categorises separately – neurological ‘ME/PVFS’ (ICD-10-G93.3) and psychiatric ‘Fatigue Syndrome’ (ICD-10-F.48.0) – and misrepresented the latter as the former. 
The goal of the PACE trial was to “was to change the behavioural and cognitive factors assumed to be responsible for perpetuation of the participant’s symptoms and disability.” A feature of the Trial is how no biological measures were reported. Studies of CBT in other conditions including HIV/AIDS and cardiovascular disease, routinely collect data on immune markers or other biological measures in attempt to understand how and why CBT works in the context of the condition studied. In fact the word”biology” is not mentioned even once .
The Trial did not conclude that Cognitive Behaviour Therapy (CBT)/Graded Exercise Therapy(GET) /PACING were cures for CFS or even ‘effective’ treatments for it; they said they were ‘only moderately effective’, a decidedly weak assessment of its effects.
 It is also important to stress that almost two thirds of PACE Trial participants received minimal or negative benefits from the CBT.
None of the PACE Trial interventions enabled participants to achieve anything like a normal walking speed for the full six minutes when compared with a healthy individual. The only reported improvement on the six minute level walking test for those allocated to CBT was an increase of 21 steps; these improvements cost the UK £5 million .
If the objective was to get patients well -and the stated objective was to remove the factors that perpetuated their symptoms (ie that caused their condition) – the trial failed spectacularly, for none of the PACE Trial treatments returned the participants to health or even close to it.
It is incredibly important to stress that the thesis that ME results from deconditioning or fear avoidance or negative thoughts was not borne out by this study.
References :
Action for ME PACE: “surprising and disappointing”18 February 2011 http://www.afme.org.uk/news.asp?newsid=1047
Margaret Williams ME/CFS: Terminology: 27 April 2009May 1, 2009 http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.htm
Cort Johnson A Hitch in its Step: PACE Trial Indicates CBT/GET No Cure For CFS, 60% of Patients Show No Significant Effects. Phoenix Risinghttp://forums.aboutmecfs.org/content.php?369-A-Hitch-in-its-Step
Professor Hooper’s Initial Response to the MRC PACE Trial Press Release hosted by The Lancet 17th February 2011
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
CFIDS Association of America Falling Off the PACE Analysis of the Lancet studyhttp://www.facebook.com/notes/the-cfids-association-of-america/falling-off-=the-pace/10150148445700539
Anglia ME Action Collective International Professional Response to PACE Required?http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1102c&L=co-cure&T=0&F=&S=&P=6265

A simple test

A Simple Test
Greg Crowhurst
18th March 2011
(Permission to Repost)


Here's a simple test to determine who has ME or not  :

Ask the person  :  how is your fatigue ?

The person with ME is the one who will tell you where to go.
Rear window By Eva Caballé
http://nofun-eva.blogspot.com/2011/03/rear-window-das-fenster-zum-hof.html
The room is almost empty; nothing but a bed and an old bedside table without any decor or curtain, all in light colors. It seems calm and quiet.
 The woman sits on the edge of the bed in front of the window, looking at the sunlight, which is orange because of the sunset. She has a quick look out the window and then observes more carefully stretching her neck as if she is looking for something. She turns and talks to the young woman who has just entered the room with an ironic and concerned smile.

Woman: Don’t you see how everybody is disappearing? It is no coincidence! They started to spray the park, day after day, while children were playing and parents and grandparents sat in the sun and chatting while watching them.

The young woman puts her hand to her waist with a tired look and responds, gesturing with her other hand, while she snorts implying that she is tired of talking always about the same thing.

- Young woman: You only see conspiracies, for you all is very simple. How can you be so sure if you hardly leave home? When you live through your window! Instead of spending hours writing pamphlets that I’m sure that nobody reads, and taking pictures, shouldn’t you focus on your next book?

The woman’s expression becomes serious and she turns angry replying with some indignation.

- Woman: But it's obvious! It doesn’t take Sherlock Holmes! The dog of the first floor neighbors died a few days after the first fumigation. They say that he was intoxicated by something that he ate... A few days ago an ambulance took the old woman who lives upstairs in the middle of the night and she is still hospitalized, when in the 40 years I have lived here I had never seen her having a cold! And what about the children's of the fourth floor? (She takes a break to breathe because she speaks so fast that she is even short of breath.) Every day I see them with the bronchodilator and every other minute in the ER! Their neighbor has cancer and since she's having chemotherapy she can no longer tolerate perfumes and now she has to wear a mask when she walks along the street. (Now almost shouting.)They say that she has Multiple Chemical Sensitivity (MCS) and doctors don’t pay attention to her!

The woman makes faces parodying the young woman’s lecture that she already expects and knows by heart.

- Young woman: You are a bit alarmist! There are only a few people who suffer MCS, there is no need to worry. And today almost everyone has allergies or asthma and authorities warn us that one of each four people will have cancer throughout our lives. 

(Goes back and speaks from the doorway leaning on the door frame.)This is the modern life. We have to die of something!

The woman turns and answers indignant from the bed.

- Woman: And does it seem normal to you? Really? And when this affects you, will you still think the same?

The young woman finally leaves the room and her voice is heard from the hallway with a tone between weary and sarcastic.

- Young woman: Well, see you next week. Do not keep on spying on your neighbors because you will end up crazy. You should amuse yourself and don’t fantasize anymore.

The woman answers raising her voice while the young woman closes the front door and leaves the house.

- Woman: Don’t worry, my attitude has no solution. (And finishes angry talking to herself.) And neither does your stupidity.

The woman is still staring out the window with indignation and with a worried face and thinks aloud.

- Woman: Does anyone realize? I see everything so clearly that it scares me. Makes me want to open the window and shout it from the rooftops, but will anyone hear me? Why don’t they listen even when you alert them? (With a sarcastic tone.) Having no time and the fast pace of life sound like cheap excuses to me. (She stands up and gets closer to the window.) It’s simple. We've become worse than donkeys, because it is not even necessary that they put blinders on us to not look beyond the established road. We no longer have the instinct to do it! We are afraid of what we might see lest we have to react. (The sun has set and she begins to close the blind.) It must be that I have no fear of looking or I have nothing to lose. It must be that my window is different..

NICE 'CFS/ME' CLINICAL GUIDELINE 53 REVIEW DECISION.


How outrageous !!!!

NICE 'CFS/ME' CLINICAL GUIDELINE 53 REVIEW DECISION.

Kevin Short

Dear All,

As a stakeholder for the UK NICE 'CFS/ME' Clinical Guideline 53 (CG53) I have today received an email notification from NICE that their review decision has been made and published. The text of the decision is pasted below along with NICE's urls from which the decision document can be downloaded as a pdf.

NICE state: "Because of comments received at consultation the review decision on this guideline was suspended until the PACE trial (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome ([PACE]: a randomised trial) reported on the 18th February 2011. The data presented in this study was taken into account to inform the final review decision. ...Through the process no additional areas were identified which were not covered in the original guideline scope or would indicate a significant change in clinical practice. There are no factors described above which would invalidate or change the direction of current guideline recommendations. The CFS/ME guideline should not be updated at this time."

It is my view as a stakeholder that the NICE GDG that developed CG53 was not and is not competent to take such decisions and, for NICE to fail to scrap CG53 and appoint a competent and representative GDG to replace it with a document that genuinely represents 'clinical excellence', represents a national disgrace and abandonment of its duty to UK patients, parliament and taxpayers. Documented evidence supporting such views are set out in my recent stakeholder comments in the consultation for this current review, are a must read for anyone wanting to understand the current decision by NICE, and are available in full at:

http://www.angliameaction.org.uk/docs/25megroup-nice-cg53-response-nov2010.pdf
http://www.angliameaction.org.uk/docs/eame-nice-cg53-response-nov2010.pdf

NICE singularly failed to examine all of the evidence and to adhere to proper standards of evidence-based-medicine and guideline development when it produced CG53. Such maladministration by NICE has, in my view, now been compounded in the recent guideline review by giving insufficient weight to stakeholder comment and biomedical evidence submitted in autumn 2010, and by giving undue weight to the psychiatric school's highly controversial PACE Trial. A formal complaint of which has been made concerning the latter and can be read, along with a recent summary of the PACE publication documentation and flaws, at the following web addresses:

http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
http://www.meactionuk.org.uk/magical-medicine.htm

Kevin Short
Anglia ME Action
14 March 2011.
contact@angliameaction.org.uk

[PERMISSION TO REPOST]


http://guidance.nice.org.uk/CG53/ReviewDecision/pdf/English
http://guidance.nice.org.uk/CG53

NATIONAL INSTITUTE FOR HEALTH AND CLINICAL
EXCELLENCE

Centre for Clinical Practice

Review of Clinical Guideline (CG53) – Chronic fatigue syndrome/
myalgic encephalomyelitis (or encephalopathy): diagnosis and
management of chronic fatigue syndrome, myalgic encephalomyelitis
(or encephalopathy) in adults and children.

1. Background information

Guideline issue date: 2007
3 year review: 2010
National Collaborating Centre: National Clinical Guidelines Centre (formally
NCC Primary Care)

2. Consideration of the evidence

Literature search

-1. From initial intelligence gathering and a high-level randomised
control trial (RCT) search clinical areas were identified to inform the
development of clinical questions for focused searches. Through
this stage of the process 25 studies were identified relevant to the
guideline scope. The identified studies were related to the following
clinical areas within the guideline:
Case definitions of CFS/ME
Information and support needs of CFS/ME patients, carers and
healthcare professionals
Management of CFS/ME

-2. Three clinical questions were developed based on the clinical areas
above, qualitative feedback from other NICE departments and the
CG53 CFS/ME Review Proposal final for web March 2011

views expressed by the Guideline Development Group, for more
focused literature searches. In total, 59 studies were identified
through the focused searches however, no identified new evidence
contradicts current guideline recommendations.

-3. No evidence was identified that was relevant to research
recommendations in the original guideline.

-4. Several ongoing clinical trials (publication dates unknown) were
identified focusing on the effectiveness of group CBT for patients
with CFS/ME; the efficacy of internet-based CBT for adolescents
with CFS/ME and behavioural insomnia therapy for CFS/ME. The
results of these trials have not been published at this time but may
contribute towards the evidence base relating to management of
CFS/ME in the next update review.

Guideline Development Group and National Collaborating Centre
perspective

-5. A questionnaire was distributed to GDG members and the National
Collaborating Centre to consult them on the need for an update of
the guideline. Ten responses were received with respondents
highlighting the FINE (Fatigue intervention by nurses evaluation)
and PACE (Comparison of adaptive pacing therapy, cognitive
behaviour therapy, graded exercise therapy, and specialist medical
care for chronic fatigue syndrome) trials as emerging new evidence.

-6. Conflicting evidence on the association between retrovirus and
CFS/ME were also highlighted. However, this is considered outside
the remit of the original guideline. No published literature relating to
the scope of the guideline was specified through the questionnaire
which contradicted current guideline recommendations.

-7. Seven respondents felt that there is insufficient variation in current
practice supported by adequate evidence at this time to warrant an
update of the current guideline.

Implementation and post publication feedback

-8. In total 104 enquiries were received from post-publication feedback,
most of which were routine. Key themes emerging from post-
publication feedback included enquiries relating to CBT, GET,
dietary supplements, complementary therapies and immunoglobulin
therapy. This feedback contributed towards the development of
clinical question 3 as described above.

-9. No new evidence was identified through post publication enquiries
or implementation feedback that would indicate a need to update
the guideline.

Relationship to other NICE guidance

-10. NICE guidance related to CG53 can be viewed in Appendix 1.

Summary of Stakeholder Feedback

Review proposal put to consultees:
The guideline should not be updated at this time.
The guideline will be reviewed again according to current processes.

-11. In total 25 stakeholders commented on the review proposal
recommendation during the 2 week consultation period.

-12. Nine stakeholders agreed with the review proposal recommendation
that this guideline should not be updated at this time, and 5 did not
respond to this question.

-13. Eleven stakeholders disagreed with the review proposal on the
basis that the guideline should focus on the aetiology and
pathogenesis of CFS/ME, and that treatments/interventions
recommended should be driven by aetiological/biomedical models.
However, current literature relating to the aetiology and
pathogenesis of CFS/ME is inconsistent and inconclusive whilst
interventions recommended in the original guideline, such as CBT
and GET, were described as the interventions for which there is the
clearest evidence-base of benefit. This is supported by the recently
published PACE trial (comparison of adaptive pacing therapy,
cognitive behaviour therapy, graded exercise therapy, and specialist
medical care for chronic fatigue syndrome among 641 patients,
published February 2011). The review of literature undertaken to
inform the review proposal also did not identify any research which
would invalidate or change the direction of current guideline
recommendations,

-14. Literature was submitted through stakeholder consultation relating
to:
-A survey of illness management requirements for people with
CFS/ME and their carers
-Multidimensional programmes for management of CFS/ME
-Biomedical and vascular aspects of paediatric CFS/ME
-CBT and GET for management of CFS/ME
-GP attitudes and knowledge of CFS/ME
-The biology and pathophysiology of the retrovirus XMRV

15. During consultation, areas to consider for review in any future
update of the guideline were highlighted including:
-Diagnosis of CFS/ME (in particular relating to case definitions,
clinical utility of diagnostic tests and recommended blood tests)
-Management of CFS/ME
-Practical guidance on pacing for CFS/ME

16. During consultation, new areas to consider in any future update of
the guideline were highlighted including:
-Aetiology and pathogenesis of CFS/ME
-Inclusion of the World Health Organization’s ICD10 classification
-Diagnosis of postural orthostatic tachycardia syndrome (POTS)
in association with CFS/ME
-The inclusion of ferritin as a marker in basic blood screening for
CFS/ME
-An emphasis on the multidisciplinary approach for CFS/ME
management and rehabilitation
-The use of mindfulness therapy for people with CFS/ME
-The inclusion of the new blood donation policy for ME/CFS
patients which was introduced from 1st November 2010

17. Because of comments received at consultation the review decision
on this guideline was suspended until the PACE trial (Comparison
of adaptive pacing therapy, cognitive behaviour therapy, graded
exercise therapy, and specialist medical care for chronic fatigue
syndrome ([PACE]: a randomised trial) reported on the 18th
February 2011. The data presented in this study was taken into
account to inform the final review decision. In the study, patients
were randomly allocated to standard medical care (SMC) alone or
SMC plus cognitive behavioural therapy (CBT), graded exercise
therapy (GET) or adaptive pacing therapy (APT). Assessments of
fatigue and physical function, social adjustment scores, sleep
disturbance, anxiety, depression and adverse events were
undertaken at baseline, 12 weeks (mid-therapy), 24 weeks (post-
therapy) and 52 weeks after randomisation. The results of the study
indicated that either CBT or GET, when added to SMC, are
moderately effective treatments for CFS. The results of the study
are in line with current NICE guideline recommendations on the
management of CFS/ME.

Anti-discrimination and equalities considerations

18. No evidence was identified to indicate that the guideline scope does
not comply with anti-discrimination and equalities legislation. The
original scope is inclusive of diagnosis, treatment and management
of mild, moderate or severe CFS/ME in children (aged 5 years and
upwards, including young people in transition to adulthood) and
adults. The guideline covers care in primary and secondary care,
and in specialist centres/teams.

19. The following equalities issues were highlighted during stakeholder
consultation. These issues should be taken into consideration
during the scoping process for any future update of this guideline:
Equal access to healthcare for all patients with CFS/ME

Conclusion

20. Through the process no additional areas were identified which were
not covered in the original guideline scope or would indicate a
significant change in clinical practice. There are no factors
described above which would invalidate or change the direction of
current guideline recommendations. The CFS/ME guideline should
not be updated at this time.

Relationship to quality standards

21. This topic is not currently being considered for a quality standard.

Fergus Macbeth – Centre Director
Sarah Willett – Associate Director
Emma McFarlane – Technical Analyst

Centre for Clinical Practice
March 2011