Take part in our Severe M.E. Symposium from home

[ahmo]

This is partly compounded by other people expecting more of me when I am functioning more, as well as my own desire to make the most of any ability increase/feeling a bit better. The underlying disease process is always there... It never goes away.

I'm so grateful to the many who share their experiences here that have steered me away from this tendency. I've never been so cautious in my life.

 

[Min]

When AfME start condemning the fatigue clinics whose graded exercise is causing myalgic encephalomyelitis to become permanently severe, instead of their collaborating with the very psychiatrists responsible for such torture of sick people, I shall start giving the charity my support.

 

[CantThink]

I'm so grateful to the many who share their experiences here that have steered me away from this tendency. I've never been so cautious in my life.

If you can learn that early then that is invaluable - not just learning it but being able to adhere to that also as in some cases it depends on life circumstances and who you live with etc. Better to be over cautious than under - I think we are generally encouraged by society to push ourselves (healthy people as well as sick people) to achieve and improve, so it's counter to that to be very careful and underestimate... It's a hard lesson to learn.

My big lesson has been learning how to underestimate and that there's always tomorrow or next week. Consequently I have lots of things that are never finished (!) and I've had to learn to be okay with that too. Plus I think I've had to help other people around me learn to be okay with that - not to make me feel guilty or expect me to get everything done.

 

[Research 1st]

The British Department of Health term CFS/ME as ''persistent fatigue''.
Source:http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx.

The American CDC term CFS as ''profound fatigue''.
Source: http://www.cdc.gov/cfs/

Thus if you have 'severe ME' according to this non scientific description, then you do not have a neuroimmune disease, but a disorder based on tiredness only.

Fatigue, is a normal every day sensation that we all feel. Basing a potentially fatal disease (ME) on chronic fatigue, is absurd and will be dismissed as psychogenic by the majority in medical practice. This happened and still happens today. Some CFS charities are also to blame, as select charities continue to support claims of effectiveness for therapies proven to be of no help at all (PACE trial), because ''their members say so''. Accuracy in this statement of CBT etc being 'effective' is of course depending on what you class a 'member' as.

Persistant Fatigue is experienced by those with mental health disorders, some of which may have a moderate to significant help with behavioral interventions (CBT) and medications (Ritalin etc) to treat mal adaptive or reactive behaviors associated to fatigue.

These interventions, unfortunately, do not work for people with chronic complex multi system disease such as ME, Parkinson's, MS etc. This is why biomedical ME and CFS charities do not support the BS theory of 'experts' who deny those with disease based CFS and ME a right to life.

The British joining the CDC's 'CFS' to Ramsay's 'ME' is precisely how you design out pathology and design in doubt and suspicion a patient with a novel neuroimmune disease is as ill as they claim.

Through the terms ME and CFS being placed under the auspices of those who disbelieve underlying untreated pathology we have seen, and still see patients lives being stolen in-front of our very eyes. If this is upsetting for partners, loved ones and carers to witness, imagine how this must feel as a patient? A patient, is first and foremost. A person.

Without diagnostic biomarkers, to have 'severe ME', reveals nothing to medical science when claims are made for effectiveness of treatments, or even groups of people 'represented' by charities.

Without a screening test and a diagnosis of exclusion (Fukuda CFS), even groups of 'severe ME' sufferers, aren't going to be ME sufferers, but a mixture. This is very dangerous for the patients, because what harms some may help others.

A mixture of different people, with different causes to their symptoms are not a unified group of people, but they can be controlled and manipulated by a draconian set of rules and people with power and influence. This is achieved by labeling people with ME, CFS or CFS/ME, ME/CFS and telling them what to do, what to think, how to behave.
It is also achieved by charities representing them, to health bodies who seek advice from charities to ask what to do next.

If people are classed as 'severe', when no test is needed, then charities need to be most careful about those left behind when using the media and government agencies, especially when those left behind have ME.

People with ME may well discover in the not too distant future they are chronically immune suppressed, infected, and inflamed at a cellular level.

From 2015-2020 it is expected novel pathogens will be made public from ongoing researching into people with ME and CFS.

Patients will get tested, and will want answers. Most importantly, patients will look back in history and ask. How did this happen to us for decades? Who represented me accurately and fairly and who represented me unfairly and in some cases, recklessly?

It's not hard to see who in society includes severe ME and CFS sufferers, and who doesn't.
The very fact patients (people) have to resort to using online forums and social media as they have no voice, and no legal powers to protect themselves from the medical profession abusing them (disease denial leads to neglect) speaks volumes of the dire situation they are in.

If we had charities who could admit this, and speak out that patients are committing suicide or self harming from a complete lack of social and medical care, then we might start being taken seriously.

Patients with severe ME and CFS can be helped enormously by charities supporting the patients agenda, not the charities own. As an example, this is why InvestinME in the UK is now the premier (and only) charity who undertakes conferences representing those with organic ME and CFS and don't compromise by inviting people who offer the BPS model, as naturally this is madness to do so.

Mainstream ME CFS charities have now fallen by the way side and tow the government line even going so far to suggest 'encephalopathy' is a more accurate term. This is counterproductive, especially now we know patients do have neuroinflammation, systemic inflammation (oxidative stress), and defective immunity that allows co-infections to flourish worsening the disease state. No brain would shrug that off, and so nerve cells would be affected. As research now shows.

CBT and GE and Pacing was fine for those with no disease, when no science was needed. (Fukuda CFS in the 1980's). Once you progress, then science begins, and the disease appears out of the magic hat where it was firmly stuffed to the bottom.

Progress is made, by including those with the disease process and speaking for them. Saying the word 'severe' doesn't speak for them. Exposing the abuses they undergo because of psychiatry does that. Yet this doesn't happen.

The only UK charity who even begin to openly speak up about psychiatry, are the 25% group, and that is because their patient base includes the deceased and people tube fed.

We need more charities to speak up, and more outwards (not inner) voices. More protest and more exposing doctors and therapists who abuse their patients in the name of their religion (BPS theory of ME CFS rejecting legitimacy of suffering in those with neuroimmune disease).

 

[jimells]

I stand for the rights of patients to choose treatments, support and care most suited to their needs, and for this treatment and support to ensure that people with M.E., particularly those with the most severe form of the illness, are not left neglected and ignored any longer.

Bravo! Ms. Chowdhury should run for Parliament. Her statement reminds me of every politician who ever ran for office:

Vote for me, because I'm against Crime and in favor of Jobs.

The entire essay is a mealy-mouthed muddle. How about taking a real stand and admit that PACE, the NICE guidelines, and the psychobabblers are a complete disaster for us???

 

[worldbackwards]

I kind of felt that it was an attempt to separate out severe patients and say, "OK, this is why we can't make CBT and GET work there, because they're different". This ultimately defends AfME's involvement in PACE (and attempts to validate it's results), talking about the 'evidence base' for use of BPS woo as if it meant anything in the first place, and supposedly defending severely affected patients against the use of such treatments. This is doubtless hugely reassuring to the mild to moderately affect patients, many of whom are AfME members, who she's happily throwing to the wolves.

My sense of irony allowed me to rather enjoy this quote, where SC claims to stand up

for the rights of patients to choose treatments, support and care most suited to their needs

Hmmmm...

 

[shahida]

interestingly when asked how they define severe they said all who are housebound and bed bound- my guesss this would be what 80% of us=v.loose definition.

 

[Bob]

interestingly when asked how they define severe they said all who are housebound and bed bound- my guesss this would be what 80% of us=v.loose definition.

It's a good point, but I'm not sure if it would be as high as 80%, as many of us fluctuate and can occasionally get out for short periods. (Some members of the forum even work.) But it depends on whether it means 100% housebound all of the time, or e.g. housebound except when assisted, or housebound except for occasional outings which have harmful consequences, etc. Like you say, its a loose definition.

 

[shahida]

i emailed them for that info' and housebound doesn't realistically mean 100% at all but loosely 'most or much of the time'. Short periods doesn't mean you're not housebound so i'm guessing most of us would be included-not sure if that helps or not. It wouldn't include those who work though, even if p. time

 

[Bob]

i emailed them for that info' and housebound doesn't realistically mean 100% at all but loosely 'most or much of the time'. Short periods doesn't mean you're not housebound so i'm guessing most of us would be included-not sure if that helps or not. It wouldn't include those who work though, even if p. time

Ah, yes, that makes a big difference. Then I agree that it's probably around 80% for regular forum users. Thanks for highlighting that.

 

[A.B.]

i emailed them for that info' and housebound doesn't realistically mean 100% at all but loosely 'most or much of the time'. Short periods doesn't mean you're not housebound so i'm guessing most of us would be included-not sure if that helps or not. It wouldn't include those who work though, even if p. time

Yes, it sounds like their definition of "severe" just means people who actually have ME/CFS.

 

[shahida]

Although having said that i'm also a member of the 25 Group and they class me as severe too- when im not , thank goodness. It doesn't correspond with the medical definition. my view of severe is what they'd call 'very severe' so even with the 25 severe me group, there's a play with with definitions. but doesen't this just serve to confuse everything? So at this symposium tomorrow i'll be going 'yes but can that really apply to the v. severe?'....etc

 

[justy]

I was accepted to go in the at home round table discussion tomorrow, but I really am ill at the moment and cant seem to cope with working out the technical details of how it all works. Then I thought maybe my husband can do it for me, but I have no idea what time it starts, what time the round table discussions are or anything at all.

Perhaps im just ill and not really coping, but even tho I have had an e mail from them I don't think it gave any specific info.. I really want to do it, but am having my worse week in years...can anyone tell me what time it all starts - anyone else doing the discussion from home to help me?

 

[ukxmrv]

I had a look for a measure of what "severe" could mean and found one in the references in the paper by Clare McDormott who will be speaking that the Symposium.

“Mild – Are mobile and can care for themselves and can do light domestic tasks
with difficulty.The majority will still be working. However, in order to remain in
work, they will have stopped all leisure and social pursuits, often taking days off.
Most will use the weekend to rest in order to cope with the week.”


“Moderate – Have reduced mobility and are restricted in all activities of daily
living, often having peaks and troughs of ability, dependent on the degree of
symptoms. They have usually stopped work and require rest periods, often
sleeping in the afternoon for one or two hours. Sleep quality at night is generally
poor and disturbed.”


“Severe – Will be able to carry out minimal daily tasks only, face washing,
cleaning teeth, have severe cognitive difficulties and be wheelchair dependent
for mobility. These people are often unable to leave the house except on rare
occasions with severe prolonged after-effect from effort.”


“Very severe – Will be unable to mobilise or carry out any daily tasks for
themselves and are in bed for the majority of the time. These people are often
unable to tolerate any noise, and are generally extremely sensitive to light.”

(this is taken from the CMO report though as the only place I could find the actual scale. The scale is from a paper is by Cox and Findley↵ Cox D, Findley LJ. The management of chronic fatigue syndrome in an inpatient setting: presentation of an approach and perceived outcome. Br J Occup Ther 1998;61:405–9., )

 

[justy]

Oh my god, just found the details, so much to do to take part... not easy for anyone with severe M.E - and mine is only on the mod end of severe.

 

[ukxmrv]

I found another thread here on the work of Clare McDermott (who will be presenting at the AFME meeting tomorrow)

http://forums.phoenixrising.me/inde...-for-individuals-with-severe-cfs-me-uk.32205/

 

[Min]

Oh my god, just found the details, so much to do to take part... not easy for anyone with severe M.E - and mine is only on the mod end of severe.

I don't know how anyone with severe myalgic encephalomyelitis could possibly participate and wonder if AfME have any idea what 'severe' means especially as they have invited speakers who promote NLP, a ridiculous treatment for the severest form of a neurological illness.

 

[CantThink]

I find Clare McDermott's scale that she used is very loose. It's not very specific. I like Hummingbird's one as it's much more broken down and specific. Using the latter you could make a 10% improvement or deterioration, and it means something.... I would find it easier to track my progression (improvement or deterioration - either way) with that type of scale versus the far broader scale.

I think that I thought AfME meant 'very severe' when they said severe, but they must actually mean moderately-severe/severe. In reality the very severe patients would not be able to access this symposium from their beds.... Those of us who fit the moderately-severe to severe would find it hard enough to participate in. The very severe are, as far as I've always understood, unable to access services as they cannot leave their homes for medical/dental/optical appointments nor tolerate visitors (especially strangers)/noise/light/chemicals that come with visitors etc...

So AfME's questions are even more redundant for them than for those who might be able to access services, if appropriate M.E. (non CBT/GET/NLP) services were actually available.

 

[Bob]

It seems to be the case that many/most severely affected patients cannot easily join in with complex online activities, but to be fair to AfME, they have invited all severely affected patients to send in their comments via email.
So, this does enable severely and very severely affected patients to be included in their consultation.
And anyone who has been severely affected in the past, but has improved, can join in the online activities.

I do think that it's good that AfME are making an effort in this area (depending on the outcome and their conclusions.)

However, if the conclusion of the project, is simply to be that CBT/GET should be offered to patients at home, then it will make a mockery of the whole consultation.

 

[Bob]

Very severely affected patients simply can't access any services, because they can't leave their beds or homes.
Severely affected patients can't access services either, without almost insurmountable access difficulties and deleterious affects on their health.
So NHS services need to be offered to patients at home, or as inpatients.
But there aren't any NHS services for ME patients, period, other than CBT or GET.