The 5 Essential Components of a biomedical ME Service

The Power of Pentecost

The Power of Pentecost is here with us today, right now. Be open to accept the Holy Spirit. He is real. He is alive. And He is with us. All things are possible with the Holy Spirit. All Mercy is received. All healing available. All hope is true.

Let us do more than Trust that the Holy Spirit is with us. Let us know and rejoice in the Power of the Spirit. May we sing Holy words and our souls rejoice in the Truth of Pentecost.

Who knows what miracles happen when we live in the Love and the Power of the Holy Spirit, who completes the awesome Trinity and flies to us from the Heart of Love ?

Amen.

Let us rejoice then and give thanks and praise. Let us be empowered by the Spirit of Truth. Let us be open to receive  and live in the Spirit right now. Amen.

Karina update

Karina update, May 25th, 2012 English and Danish

Good news! Karina is getting her first intravenous treatment at home today, on May 25th! Actually, this afternoon, she is already getting the IV drop!

On Wednesday the 23rd, an appointed doctor and Dr. Isager visited Karina’s house. The appointed doctor told Karina’s parents that there were no further plans to remove Karina from her home and that they would work on getting the IV started in the home right away. It still seems unreal to the family. They have been through so much. They send their thanks to all of you who wrote and posted about Karina. They are sure it helped.

One correction about my earlier posts: I wrote that the Board of Health planned to commit Karina and I want to clarify what I meant.  The Board of Health technically cannot commit anyone because a doctor has to sign the paperwork. So the Board of Health did not directly order Karina to be committed, but a consulting doctor at the Board of Health ordered Karina’s GP to do it.  

This consulting doctor, LG, called Karina’s GP on May 1st and told her that a psychiatrist in Copenhagen – who had never seen Karina – concluded from his information,  that Karina must be in a “lunatic-like state” and should be committed immediately. The GP did not want to do this; she wrote that there should be an evaluation to indicate if this was necessary. The GP warned the parents about the contents of the call from the Board of Health’s consulting doctor. 

On May 3rd, LG called Karina’s GP again and said that a meeting had been held about Karina with LG’s boss, and the conclusion of that meeting was, that the Board of Health believed, that Karina’s GP was required to do as they asked.  LG told her, it was her duty as a doctor. A lawyer (I think from the Board of Health) told Karina’s GP the same thing: that she had to do this. The GP writes in Karina’s journal that she was ordered to do it. It is clear that she felt that she had no choice but to visit Karina with the order to commit her. A lot of doctors would have given into the pressure and signed the papers, but this GP did not. And her courage to do what she felt was right, gave the family and the world time to act. Thank you.

My worry at this point is where the blame will be placed. How is the Board of Health going to spin this? We can only wait and see, but what I hope happens is that they take a good hard look at the way they have been treating ME patients up to now. Karina’s GP tried for months to get Karina the IV, she needed and was told time and again that the only treatment she was allowed to offer Karina was psychological help at a center for functional somatic disorders. No matter how the government tries to spin that, it can only be explained by the fact that the Danish government has allowed ME to be categorized and mistreated as a psychiatric illness. 

But let’s look forward. My hope is that the Karina-crisis has opened some hearts and some minds and that things will start to change for the better. Right now, Karina is so ill that she is unaware of the impact she has had on people. But I hope that someday she will be well enough to sit at the computer and read about it.

This update has been approved by the family.

When you can't

6am. My wife gasping,  she is so much agony;  she cannot take any more, she cries.


The pain, paralysis, numbness, noise, light, touch sensitivity,profound  multi-system dysfunction  has lasted for over 18 years. Change, such as it is, moves at a glacial pace. Professionals take all the time in the world, months,  to get back to us. All I could do was dig  deep  ,  to offer what crumb of comfort I could could.


Later , on my bike, for that is how I cope myself, I crest a hill and see white waves breaking . Here's the thing, I tell  myself. We have always taught that the three most important decisions anyone with ME has to make, at anyone time are :


When you CAN
When you CAN'T
When you MIGHT 


..But what  happens when all that's left  is 


CAN'T ?


What  then ?

GET Poster

Please download here :

https://docs.google.com/open?id=0B_euvZrZ80MxZTlaNmZXYWVWN0k

ME Poster

Please download from here : 
https://docs.google.com/open?id=0B_euvZrZ80MxUGlrbk1oaXFWQjg

Truth Poster

Please download here :

https://docs.google.com/open?id=0B_euvZrZ80MxQ3JDTzY1NWROeW8

The greatest danger for people with ME

The greatest danger for people with ME
Is its misrepresentation as  fatigue.
Its misinterpretation as a condition or syndrome.
Its mispresentation  as a mental health disorder.
It is caused by physical dysfunction.
It is a neurological disease.
There is no cure.
The greatest danger comes from complacency
From not realising  the name does matter
From compromising away  its true nature and reality
From putting  funding or power or status or  compliance with the fatigue lobby
Before speaking and representing the Truth of ME
The result of complacency and compliance
Is the  current  lack of appropriate  biomedical services
For people with ME
The abuse and wrong treatment of people with genuine ME
The denial of symptoms
And the legitimisation of misinformation
And  medical neglect.
When will the people who have genuine ME
Be seen
Acknowledged
Heard,
Listened to
Respected
And properly provided for?
What do we have to say
To be effective ?
What do we have to do
To get a fair response?
What  do we have to experience
Before the world listens ?
What  more do we have to suffer
Before the governments and the health services
Of the world acts responsibly
And  treat us properly
For the neurological
Severely debilitating
Physical Disease
That we actually have?

Latest update on Karina

Karina is still alive and still at home. The family’s lawyer is advising them and will guard Karina’s rights. This lawyer has had many cases with ME patients and he understands the disease.

Thanks to Greg Crowhurst – www.stonebird.co.uk - and perhaps others – the Danish Embassy in London became aware of the case and contacted the Danish Board of Health. The Embassy is taking this case very seriously. There is pressure on the Danish government from many sides now to treat this case correctly. The power of facebook!

Yesterday the Board of Health contacted a neuropsychologist about Karina’s case. He was asked to contact Dr. Isager and to have the two of them look into the case. We see it as a positive step that the Board of Health is asking for Dr. Isagers opinion in this case. Dr. Isager has devoted years to helping ME patients, making home visits and helping them when no one else would. He has endless heartbreaking stories about the cases he has seen in his years of helping these abandoned patients. I have the highest respect for Dr. Isager. He wrote a book in Danish last year called Blinde Pletter: Blind Spots – on the Medical and Health Sector’s Amputated Reality: http://hovedland.dk/bog/Blinde_pletter.htm It is about the blind spots the medical profession has for diseases like ME and a criticism of the way the Danish Health system treats them.

It is our hope that the Board of Health and the neuropsychologist will listen to Dr. Isager’s advice about how to treat Karina. What we want right now is to get Karina the medical assistance she needs to keep her alive. As for the neuropsychologist – I will not give out the name because I don’t want this person bombarded by mails. We sent information about ME to this person and have offered to be of assistance in any way we can. We are working to keep the tone professional and friendly. We, the ME Association, hope that this case can start a constructive dialog with the Danish Board of Health about what ME is and how these patients can be helped.

I am sorry that I can’t share more right now, but please know that if anything happens with Karina I will post immediately. 

10 good reasons why ME should not be labelled as a Functional Somatic Syndrome (FSS)

10 good  reasons why ME should not be labelled as a Functional Somatic Syndrome (FSS)

Greg Crowhurst March 2012

(Permission to repost)

This article is written in direct response to the terrifying  situation in Denmark, where Severe ME suffer Karina is under threat of being forcibly removed from her home and place in a mental asylum because  the Danish Board of Health is working with a "well-known Danish psychiatrist" , who has never actually seen Karina, but is seen by the government as an authority for “functional somatic syndromes” so they are  acting  upon
his advice.

What is a Functional Somatic Syndrome (FSS)  then ?

A FSS is defined as  a condition which “after appropriate medical assessment, cannot be explained in terms of a conventionally defined medical disease”. Functional Somatic Syndromes  are argued to have the following in common :

an apparent overlap of symptoms (e.g. fatigue, headache);

patients with one syndrome frequently meet the diagnostic criteria for others (e.g. CFS and IBS);

patients with these syndromes share non-symptom characteristics, such as relatively high rates of emotional distress, the “predominance” of women, a history of child abuse and difficulties in the doctor-patient relationship;

all functional syndromes tend to respond to the same therapies (e.g. CBT/exercise/antidepressants).( Goudsmit and Doorduin 2000)

10 good  reasons why ME should not be labelled as a Functional Somatic Syndrome (FSS)

1. Myalgic Encephalomyelitis (ME), has been classified by the World Health Organization (WHO) as a neurological disorder since 1969. Currently it is listed in the International Classification of Diseases (ICD), chapter 6, under Disorders of Brain at ICD-10 G 93.3. It is not classified as a mental health disorder.

 Goudsmit and Doorduin (2000) ask in relation to FSS : Does anyone know of an instance where our knowledge of disease progressed as a result of lumping disorders together and ignoring their differences? We don’t….On what basis?"

2. The burden of proof is always upon the clinician  to show  no "demonstrable tissue abnormality" , if they cannot then FSS is no better than "specious speculation”. As Dr English goes on to  state: " Absence of evidence must not be confused with evidence of absence... absence of evidence may reflect insufficient research, inadequate technology, poor methods, flawed paradigms, closed minds, or lack of clinical experience; for example, in 1980, there was no clear evidence that AIDS was viral - blood products were considered ‘safe'. Dr English (Letters responding to Wessely et al. Lancet 1999, 354, 2078-9.)

3. The  existence of an illness is not dependent on a reliable, objective marker to identify the condition, or upon knowledge of aetiology. As  Drs Bell and Lapp state :  “We accept the existence of a migraine despite the lack of blood tests or x-rays that prove its existence.” In any case  the assertion that there are no markers to identify or study ME is incorrect.  Bell and Lapp  note that “unfounded opinions can lead to cutbacks in research funding, erect obstacles to published research, and increase the difficulties of patients who seek compassionate medical care.” In these cases, “the authors would be committing gross malfeasance, harming both the medical community and the patients to whom they are dedicated to serve”. (Bell and Lapp. Letter to the editor of the Annals of Internal Medicine. Newsletter AAFCFS, Aug/Sep. 1999.)

4. Much of the evidence supporting the concept of FSS relies on "generalisations and some deeply flawed research. " It is  unclear how the evidence base for FSS  manages  to unearth so many studies supporting psychiatric explanations for disorders like ME  and PMS and virtually none showing  that biological factors play a major role. . (Goudsmit and Doorduin 2000)

5. The "lie that there is no known medical pathology" in ME  is the foundation of a diagnosis of FSS.  According to Anthony Komoroff, Professor of Infectious Disease at Harvard Medical School, there are over 4,000 articles in peer-reviewed medical journals showing frank biological pathology in ME. (Reilly 2011)

6. In terms of ME ,  a diagnosis of FSS also seems to miss all the studies challenging the effectiveness of CBT/GET  etc. (Goudsmit and Doorduin 2000)

7. Science demands precision and that effectively rules out umbrella terms like FSS. (Goudsmit and Doorduin 2000)

8. The mislabelling of patients with ME as having FSS , in the current climate, is highly irresponsible , because it undermines the  possibility of physical investigations , and so endangers people's lives. It is wrong for people with ME to be given a mental health label that is the equivalent of being called a  ‘hypochondriac’. (cf Kemp 2012)

There is clear evidence that ME is not the same as depression or any other psychiatric disorder. It is wrong to label  people with Severe ME, who have profound multi-system dysfunction as having a mental health disorder.

9. A diagnosis of FSS is  a serious matter as M.E. is classified by the WHO ICD as a neurological illness. A doctor whose diagnosis of ME  is  then contradicted by a doctor that diagnoses FSS, could perhaps lead to a legal challenge.  The implications to the proper care of a patient, due to misdiagnosing a serious neurological illness as a neurotic illness hardly bear thinking about. Hindering necessary investigations and treatment might only be a small part of the problems this might create. (cf Kemp 2012)

10. The question of what a Functional Somatic Syndrome is has  never explicitly been addressed or answered.  The adding of the word "functional" to "somatic" blurs  the boundary between physical disease and mental health issues, leading to people being wrongly labelled and mistreated.  The adding of the term "function" to the term "somatic" leads to the systematic denial of the physical causes of ME. It is a very dangerous game to be playing.

As Dr Komaroff argues : " The symptoms of these "functional" illnesses probably have biologic underpinnings, even though the articulation of a patient's suffering clearly is influenced by personal experiences and cultural values. Although we are a long way from identifying the precise pathophysiology of these illnesses, there is considerable evidence that they have an underlying biologic basis. "(Komaroff 2004)

The involvement of psychiatry in ME,  has lead  to a situation where physical causes are not sought and even argued against or positively proscribed. The tests required to prove the disease are not being widely offered , developed or easily developed.

People with ME are trapped in a cycle where their physical disease is denied  and where this is seen as justification of an FSS label. It is  the perpetrators of the psychosocial paradigm  who have helped create this nightmare environment, by their misinterpretation of ME.

The last thing anyone with genuine neurological ME needs is a mental health professional , with a psychosocial agenda determining their treatment, or being involved in their diagnosis.

A psychosomatic interpretation of ME  creates a chicken and egg situation where you have to have the tests to prove you are ill,  but the psychiatrists  have denied  you those  tests ,  so you will not have the proof to prove you are ill. Yet wanting to have the tests or being concerned about your health, because of your symptom severity, is seen as "maladaptive thinking" and proof of FSS; in that sense a diagnosis of FSS, sets up a vicious self-fulfilling circle, endangering the lives of people with ME, especially the most severely affected.

In the current climate where people with ME  are in danger of being treated behaviourally rather than medically ,  patients with ME  are massively at risk of having their physical reality denied.

The only thing that will keep  patients with ME safe are biomedical tests that will prove there is physical dysfunction and accurate biomedical interpretation . Yet this is currently denied the vast majority of patients with neurological ME.

References :

Goudsmit E (2000) Is CFS a functional somatic syndrome? http://freespace.virgin.net/david.axford/cfs-fss.htm

Haywwod S (2011) The Psychologist: Functional Somatic Syndrome ME is a "Costly Conundrum" http://www.mecfsforums.com/index.php?topic=8186.0

Kemp P (2012) DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch flawed, unsafe and unscientific proposals.

Submission from Peter Kemp, UK advocate http://dxrevisionwatch.wordpress.com/

Komaroff A (2004) book review: Functional Somatic Syndromes N Engl J Med 2004; 351:2777-2778, Dec 23, 2004. Book Reviews http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=498544

Reilly J (2011) The Psychologist: Functional Somatic Syndrome ME is a "Costly Conundrum" http://www.mecfsforums.com/index.php?topic=8186.0

Care for Someone with Severe ME, now released in print.

Stonebird is delighted to announce that finally the paperback version of  Care for Someone with Severe ME  is ready and available to purchase  :

http://www.stonebird.co.uk/howtosevereme.html

There has never been  a more pertinent time to be raising awareness of the reality of Severe ME - witness the unfolding events in Denmark .

In our painful experience, the danger to people's health is growing .

Even here in the UK, where ME is officially recognised as neurological , the truth of the disease  is  being gradually diminished , as experience it,   in a deepening  sea of fatigue- speak.

To our great concern we see middle  of the road medical  teams and researchers - who profess to be biomedical,  still following  a psychosocial interpretation ,  still using   the same old fatigue language, still not  challenging  the establishment, still   compromising ME  away,  still hindering genuine knowledge , still  making the person with ME   wrong,  rather than looking to their own inadequacies, their  lack of knowledge and disrespect for the true nature and symptoms of ME .

The new danger  to us, is the danger of complacency, :   a shocking  willingness ,in the medical and research fields to accept that psychiatry has the right to be involved with ME, a willingness to call ME a fatigue condition, a willingness to  blur boundaries that should be crisp and clear and separate, a willingness to  accept psychiatric interpretations, a willingness to  call illnesses  that are not ME,  "ME" -  and to call ME, "CFS" .

These "compromisers", high profile in many cases,  are just as dangerous, in our view,  as the hard line psychiatric lobby ; for they are  still busy throwing  away the  truth of ME  for some other prize whether that is financial gain, funding, security, status or just ignorance.

 The  word "fatigue" is not appropriate  for ME.

During the course of writing my book three young women with Severe ME , including Emily Collingridge, died. My wife , seriously ill and now greatly deteriorated, does not want to die too, just   because not enough people have the guts to challenge the psychiatric lobby ,  not enough  professionals have  the integrity to challenge government  policies , attitudes  , wrong health service provision and assumptions and  not enough ME  organizations are really representing people with ME.

The voice of truth is desperately needed, in these dangerous times for people with Severe ME. ME is not fatigue, this book shines a light on the reality of the WHO neurological disease Myalgic Encephalomyelitis.

Help Karina - please , please write to the Danish Ambassador

Her Excellency Ms Anne Hedensted Steffensen

The Danish Ambassador

Embassy of Denmark

55 Sloane Street

London SW1X 9SR

Dear Ambassador

I am very concerned to read that the Danish Board of Health plans to commit to a psychiatric hospital Karina Hansen, a 23 year old woman from Holstebro Denmark, who is seriously ill with ME (Myalgic Encephalomyelitis).

Ms Hansen is bed-bound, unable to tolerate minimal light or sound and is too weak to talk.  She is so ill that any attempt to move her could prove fatal.

ME is not a psychiatric illness. The World Health Organisation has recognised it as a neurological disease since 1969 and it is classified as such in its International Classification of Diseases, Tenth Revision ICD 10 - G93.3

I would therefore be most grateful if Your Excellency would convey my concern to the Danish Board of Health and urge them to act on the recommendations of the Danish ME expert Dr Isager and Ms Hansen’s family doctor regarding her future treatment.

Believe me, My dear Ambassador

Yours sincerely

What can we do for Karina ?

Very sad news from Denmark:
Danish Board of Health threatens to commit seriously ill
ME-patient to a psychiatric hospital.

The Danish Board of Health says that the diagnosis
of ME is the same as insanity and wants to forcibly
remove a 23-year old woman, Karina, from her family
home.



This could happen as soon as May 2nd.

Karina is totally bed-bound, is extremely light and sound
sensitive and is too weak to talk. .

She is so extremely ill that there is a real chance that a
move could be fatal.

Karina’s parents have been trying to get permission to set
up an IV at home to help keep Karina alive, but instead the
health department decided that Karina is mentally ill and
should be removed.

The family has been repeatedly told by Danish doctors that
the diagnosis of ME is not recognized.

“They do not understand how sick an ME-patient can be with
this disease and their ignorance can now have fatal
consequences for Karina“

says Rebecca Hansen, Chairman of the ME Association in
Denmark.

Please help us by spreading this story on-line and to the
media.

We would like to get journalists interested in writing about it.

Rebecca Hansen can be contacted at:

icerebel62@hotmail.com

25% Group & Stonebird : DWP Personal Independence Payment Consultation Response

Personal Independence Payment: assessment thresholds and consultation response by the 25% ME Group and Stonebird.

1. The government wants to find new and better ways to work out who gets Personal Independence Payment. This will be done through an assessment.

We are concerned that the true intention is primarily to cut costs rather than meet need. We are aware that the stress surrounding the whole reassessment process will put peoples’ health and lives at risk, especially those with Severe ME, who are extremely vulnerable and likely to deteriorate, under these circumstances.

The whole message, highlighted by the cartoon on page 5 of the Easy Read Document, is a confusing one for people. The cartoon is too simplistic an interpretation. A lot of people with ME do not necessarily get the amount of help they actually need, like the carer in the picture, because they are so physically hypersensitive and ill and may be unable to access that help. 

We would like to pose the questions:-  “Will PIP be a genuine assessment of need, or will it be based on a flawed assumption based on what people currently get?”, and,

“Is PIP going to make the assumption that the applicant doesn't need the care, because they currently haven't got it?”

We would also like to ask what PIP actually considers “independence” to be?

2. Many people and groups got in touch and they had some good ideas to make Personal Independence Payment better.

We consider this statement to be incorrect; as the last consultation response was ignored.

The need for DLA, as it is, is apparently accurate, given the extremely low fraud rate. We, along with many other groups, asked the Government not to go ahead with these changes and to keep DLA as it is.  Also the last consultation was confusing and was likely to result in people answering the questions wrongly, because the questions were so complicated.

To make these changes to the benefit system is to deny peoples’ independence because so many claimants will lose money, as a result. PIP, paradoxically, as we spelled out in our last response, will actually result in a loss of independence for many people, who are currently assessed as having a genuine need.

3. On 14 November 2011 the government sent out a second booklet about the changes it had made as a result of the consultation. The booklet was called “About the Personal Independence Payment Assessment.”

We were not sent a booklet and were unaware of the second consultation process, even though we participated in the first consultation. Who was the booklet actually sent to? Was it sent out only to a certain percentage of respondees, given we did not receive one?

Is this a genuinely inclusive consultation process, where you are reaching everyone who has an interest, or are you simply excluding those who do not agree with your strategy?

4. There will be 2 rates of Personal Independence Payment – a standard rate and an enhanced rate

As we stated in our first response, we do not agree that there should be only two rates, as this will automatically exclude all those currently on low rate DLA, presumably. PIP, therefore cannot be about enabling independence, as it claims, as many people will be negatively impacted upon by this loss and their health and safety might be at risk.

This is particularly of concern because people with Severe ME do not always receive the right level of DLA in the first instance and may therefore end up being excluded all together, because of misinterpretation of their need.

5. Daily Living Activities:

Without knowledge of what specific questions are going to be asked to assess daily living activities, it is impossible to say whether 8 points is even achievable. Therefore it is unsafe to give to give the government the go ahead without knowing in detail how you achieve 8 points.

Not enough detail has been provided here to make a full comment.

The key point is how you frame the questions and whether this will result in the correct information required to safeguard the needs of the ill person. We feel the danger is that the questions may be so confusing, severely ill people will be so confused and therefore not answer them fully or correctly to actually reflect all their needs.

We would hope there  would be adequate space to explain needs and not just a simple tick box system, which will not give adequate protection for people with Severe ME by not facilitating their need to fully explain the daily requirements.

6.Taking medicines, looking after health and doing treatments a health expert says are important .

It is extremely concerning that this has been included. It sounds as if this could be used to withhold benefit if people do not comply with treatments which either may be impossible for them to do or may actually risk being harmful to the person. With ME there is great potential of harm if people are going to be forced to undergo a Cognitive Behaviour or Exercise programme in order to receive their benefits.

It is completely unacceptable to raise this issue as a benefit need. We feel this needs to be withdrawn to make PIP safe for people.

7. The change to Personal Independence Payment in 2013 will only affect people aged 16 to 64.

Why is it not in line with pension age rises, which are going beyond 65?

8. So, by the end of March 2016, half a million fewer people aged 16 to 64 will be getting Personal Independence Payment than would have been getting Disability Living Allowance.

How does this equate with the idea of enabling independence, when you are going to cut half a million disabled people off from essential financial support for independent living?

Given the fraud rate is only 0.5%, how can you justify removing half a million people from benefits? This appears to be discriminatory.

9. To make sure the assessment takes this into account, the government thinks that the assessment should look at how a condition or disability affects a person’s daily life or mobility over a 12-month period.

This is very concerning. We are unsure what the actually means. Does this mean that claimants will be subjected to continual investigations and reassessments? Also, how are you going to ensure that anyone involved in this process understands the physical reality of chronically ill patients?

What is the actual justification for this idea of continual investigation and reassessment if the government has already accepted that unless you can do something constantly you cannot manage it. It seems to us that to continually check on people to see what they can do at any one point, sounds like an harassment of the chronically ill and is likely to cause great harm to people with Severe ME who are at great risk of post exertional deterioration and physical decline, caused just from the effort of assessment itself. It is also an unnecessary waste of taxpayers money and likely to cause serious deterioration in people's health and life as a consequence.

There is such misinterpretation and misunderstanding of the severity of illness in ME that people with ME will at great risk of misinterpretation and misrepresentation. If someone has a variable condition they should be respected as disabled without constant monitoring, worry and stress.

10. If the person’s health condition or disability affects them enough to get assessment points for

• at least half the year (183 days or more), the points should be taken into account in the assessment for the full year.

• less than half the year (182 days or less), the points should not be taken into account in the assessment at all.

If a person’s health condition or disability affects them enough to get points during any part of the day, the assessment should treat those part days as full days.

How is the government going to determine a variable condition in the first place? Are they going to choose certain illnesses and treat everyone within that category the same way? This could certainly result in unnecessary stress and potentially a decline in health, as a direct result of the repeated assessment procedure.

How is the government practically going to do this without making people more ill and wasting taxpayers money?

If you have a disease, you have it; you do not have it some days and not others, even if you can manage some days better than others. It is wrong to put this additional reassessment burden on people.

On what basis has the government decided that 182 days is the cut-off? How are you going to determine on the 183rd day the person is still eligible for benefits?  It should be respected they have the illness all the time.

We feel this is just making people's lives harder, not enabling independence.

11. The government thinks that the person doing the assessment should always think about whether a person can do an activity ‘safely, reliably, repeatedly and in a timely fashion’.

• Safely means that, when doing the activity, the person is unlikely to hurt themselves or other people.

• Reliably means that the person can do the activity in an acceptable way.

• Repeatedly means the person can do the activity as many times as needed during the day.

• In a timely fashion means the person can do the activity in less than twice the time it would take a person without a condition or disability.

Is the government going to publish the precise times they are talking about or will it be up to the assessor to make an arbitrary decision? Anything less than "normal" ability is going to be potentially dangerous to health and safety.

Who is being judged as fit and able, who is being used as a benchmark?

An arbitrary judgement of how long is ridiculous. If, for example, you need to get to the toilet, have an overheating chip pan, break or need to apply the break while driving, an immediate response is required for safety. Anything less than full ability should count towards points.  It would potentially endanger people's lives to make these judgements.

Some Key Points about Specific Questions in the Consultation

Question 1 – What do you think of the government’s latest ideas about the daily living activities?

Endangering, sinister, punitive, neglectful, arbitrary and prejudiced.

Question 2 – What do you think of the government’s ideas about the points allowed for daily living activities and the points you need to get this component?

Not enough detailed information to make a fair judgement.

Potential to misrepresent real need.

Question 3 – What do you think of the government’s latest ideas about the mobility activities?

Not enough information on how it is going to be assessed, what questions are going to be asked and what information will be required.

Question 4 – What do you think of the government’s ideas about the points allowed for mobility activities and the points you need to get this component?

Not enough information to tell.

Question 5 – What do you think of what the regulations say about deciding who can get the payment?

The fact the government’s intention is to take half a million disabled people off DLA rather than honour their need, is unacceptable. There is a discrepancy between what the government says it what it wants to do and what it is actually doing.

There is also no clarification whether the proposed high rate will be the same as high rate DLA.

Question 6 – What do you think of the government’s ideas for dealing with health conditions that are sometimes a little better and sometimes a little worse?

Unnecessary, discriminatory and irrelevant. If you need help some of the time it should be equated with needing help all the time, there is no need for this harassment of disabled people. The underlying motive is suspicious.

Question 7 – What do you think of the government’s ideas about the meanings of the following words – safely, reliably, repeatedly and in a timely fashion?

"Timely fashion" is ambiguous, it appears to be completely arbitrary, vague and not respectful enough of the individual problems and issues people experience.

Question 8 – What do you think about the way the regulations show the meanings of words?

Not enough words have been explained. There is not enough detail about how people will be assessed and how the points will be allocated to particular abilities, within a section, on which to base comments generally.

Given that the Personal Independence Payment: second draft of assessment criteria 2.10 states : "As with the technical note we published in May, this document does not consider the delivery of Personal Independence Payment assessments as work on the claims and assessment processes of the new benefit is still ongoing." People should not be asked, at this stage to make blanket comments validating the process.

Question 9 – Do you want to say anything else about the draft regulations?

We are greatly concerned that people with Severe ME may be subjected, wrongly, to additional assessments and hope that people who are severely affected will not have to face the added burden of a yearly assessment which appears to be discriminatory rather than supportive.

It is unacceptable to have any health provider recommendation associated with gaining benefits whatsoever and needs to withdrawn to ensure people's safety in obtaining support.

It is essential that people with Severe ME, whose health would be endangered by face to face contact, are not exposed to face to face assessments; their health is in great  jeopardy and must be protected at all costs.