Invest in ME Research
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Caring for Someone with Severe ME


"She was gradually deteriorating.
Every tiniest activity (physical, cognitive and sensory) from washing her hair to rubbish collection day, had devastating results.
Sometimes she could recover in a few days, other times it would take months, but often the cumulative effects of the noisy, smelly, bright, sunny, loud, vibrational, fast, chemical based world we live in were all too much and disease progression with permanent damage resulted.

Doctors always amaze me when they are puzzled by her severity and wonder why it's taking so long to 'pick up her bed and walk".

Lili


It is difficult to convey fully the overwhelming effects of severe ME – on the patient or on carers.

We can only allude to the horrendous course that ME can take, point out at how little has been done to address this particular issue of ME, and state what we, as a charity, are trying to do to change things.

The odds are stacked against carers if the person(s) they are caring for suffer from ME.

Carers have to stop their normal life to try to come to grips with the effects of this disease on themselves as well as the patient.

Lack of understanding about the disease by the public – a great deal of which has been caused by misinformation from media centres and compromised media editors - can even affect relationships.

If a carer/partner does not understand the illness or has been misinformed due to the media propaganda then subsequent strains on relationships can take its toll – thus further aggravating the situation for the patient.

Apart from having to research oneself what this disease is, and what treatments there may be, a carer/parent may suddenly be met, not with compassion or understanding, but with the full force of social services intervening and suddenly becoming victim to the ignorance that pervades society.

The other insidious effects of ME that the patient experiences – such as isolation – may also come into play for carers.

Kjersti Krisner gave a moving testimony of issues with severe ME in her pre-conference dinner presentation prior to the 11th International ME Conference in London in 2016 - click here

If one wished to see all that has been wrong with research policies toward ME by establishment organisations over the years then one would only need to see Kjersti's presentation

Kjersti's family of three severely affected children was highlighted in Norwegian TV with the NRK channel Pulse program in 2009 - click here

Meridian TV aired a series of programmes in 2005-2006 covering the effects of ME on severely affected patients- click here

A reporter from Meridian interviewed a number of ME sufferers in Hampshire as well as the regional ME centre.

This set of interviews conveyed the suffering and lack of action regarding ME - click here.

One of the most shocking and heartbreaking cases involved Sophia Mirza.
This article (click here) is an account of some of the main events of Sophia’s illness, severe M.E

The full force of establishment ignorance about ME came crushing down on one poor girl and her family.
Had this story occurred today, with all of the effects of social media, then the story would have been a national scandal with resulting action being taken.

Instead Sophia's mother, Criona, had to continue to campaign for years to try to get justice.

Meridian TV also covered some of Sophia's Story in 2006 (click here) with these two Meridian TV programmes -

Meridian ITV Interview 1

and

Meridian ITV Interview 2
NOTE: All rights to Meridian programme material ©Copyright 2006 ITV Meridian



Invest in ME Research oganised a conference call in 2013 with Dr Martin McShane, Director of Domain Two, NHS Commissioning Board, after a supporter contacted her constituency MP (which happened to be the Prime Minister at that time).

In that meeting the parents of the very severely ill young person gave a presentation of their experiences since their child became severely ill at the age of 8 in 2000.

The presentation was very powerful and was conveyed in a very professional manner despite the obvious anguish and distress which it caused the parents.

  • - There was a cluster of 5 people who became ill at the same time in the small village in which they lived

  • - Not one GP took it upon themselves to investigate

  • - Life was a living hell as their child could not talk, could not swallow and was sensitive to light and noise

  • - Severe ME causes panic in healthcare professionals who want quick fixes, and look around for some other causes in parents or patients (Munchausen’s by Proxy, Pervasive Refusal Syndrome and so on ) despite the CMO report recognising ME as an organic illness

  • - Good doctors who kept children safe from the threat of child protection orders have now retired or passed away so the parents have nowhere to turn to for support

  • - OTs were helpful but in their experience GPs had been terrible

  • - Advice/information given by unhelpful GPs and consultants, paediatricians over the years included removal of parental support, physiotherapy, stating that ME is not a real disease, that it was an illness caused by exam nerves etc.

  • - GP visits were unannounced, and the family was reported to social services for neglect and the family were then asked to leave the GP service

  • - In 2012, after a fairly stable period, tooth surgery caused a severe relapse and the GP decided to resurrect the earlier accusations

  • - The family had kept quiet for 12 years but felt now that enough was enough. They had sent complaints to PALS. The doctors had refused to comment.


This representation was enough to convey what many in the UK had felt for a generation and for which little has, or is being done.

Dr McShane commented that to change the quality of life with long term conditions we have to accept what we do not know.

IiMER felt this was not good enough.

We explained how we had sat in countless meetings, with words said, promises made and nothing ever changes. It was unacceptable.

Empathy was fine, and we were grateful for Dr McShane’s acknowledgement of the poor service given to ME patients and their families.

But we needed to progress – and we had ways, proposals which could be used to progress this.

IiMER pointed out the difficulties in getting anything done and we did not want to go away from yet another meeting with nothing, and no action plan.

The local commissioner at the meeting had promised education of GPs.
But we all felt that there is a major problem in the lack of accountability.

Nobody seems to want to take responsibility - and this extends from the local level right the way up the chain to the CMO and the Minister for Health. (IiMER mentioned that CMOs had been invited to every single one of the eight (at that point in time) IiMER annual conferences - without any sign of leading or an agenda for ME)

IiMER suggested using this area (ME) as an example of a difficult area of medicine and use it as a model for nationwide services.

Dr McShane promised to promote Dr Terry Mitchell’s approach (kind, caring, patient centred).

Whilst we felt Dr McShane was genuinely empathetic to the plight of ME patients and their families we saw no appetite from any direction in the NHS to invoke change, to rectify the inadequacies in the NHS or to initiate any visionary approach to progressing ME.

And so it proved to be.

At the meeting our overriding feeling was that we would have to continue to make the changes necessary ourselves.

And so it proved to be.



Dr Amolak Bansal wrote Extemporaneous Notes on Severe ME from the #IIMEC8 in 2103.

Sidsel Elisabeth Kreyberg carried out a small survey on Caring for seriously ill ME-patients that showed how important experience was in the work with ME - click here

Severe ME patients have not often been included in research into the disease. This may be necessary on occasions, depending on the type of research or the logistics of accessing the patients in their delicate state.
But IiMER have always stated that severely affected patients should not be excluded from research.

Invest in ME Research are currently funding research into ME with severly affected patients being included - click here and click here

Diane - the carer/mother of severely affected daughter Lili, eloquently described her caring for her daughter and how her whole life was lived from her bed.

Diane describes her GP "as an aggressive rude man who insulted Lili to such a degree that I wanted to throw him out".
Attempts to change things resulted in a different GP being arranged - one who visited Lili but had seemingly already prejudged both carer and patient and who was very keen for Lili to do Graded Exercise Therapy (GET).

This already horrendous situation for Lili and Diane turned ever darker when social services intervened amid doctors' allegations of abuse.

In Dianes's story of Lili (click here) Diane writes -

"The carer of an M.E. loved one is like no other carer.

Not only is it imperative to learn about myalgic encephalomyelitis in order to give the specialist care required for M.E. (to avoid causing them further harm), it is also necessary to become their protector.

This serious illness is very misunderstood, even by doctors. Society as a whole has a very misguided view of M.E. and so the carer has to do all they can to keep this harmful ignorant tribal thinking from entering the world of the M.E. sufferer. They need to protect their healing space from influences, opinions and 'treatment' that will cause disease progression and maybe even death.

But who protects the carer?

In some ways the carer is as vulnerable as their loved one."

".....the carer is as vulnerable as their loved one....."


That says it all about ME



And Lili? -

"Lili collapsed after her last hospital visit.
She passed out with a seizure, her body violently shook, and paralysis spread throughout her body.
It was an extreme reaction to the overload of physical, cognitive and sensory attack on her body during that year, but this last journey to the hospital was the straw upon the last straw that broke her body down.

She never recovered."

- Lili


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